TY - JOUR AU - Tran, H. Yvette AU - Park, Seho AU - Coven, L. Scott AU - Mendonca, A. Eneida PY - 2025/5/2 TI - Area-Level Indices and Health Care Use in a Pediatric Brain and Central Nervous System Tumor Cohort: Observational Study JO - JMIR Public Health Surveill SP - e66834 VL - 11 KW - child opportunity KW - neighborhood deprivation KW - area deprivation KW - social vulnerability KW - health care use KW - social determinants of health KW - pediatrics KW - health disparities N2 - Background: While survival among pediatric patients with cancer has advanced, disparities persist. Public health tools such as the Area Deprivation Index, the Child Opportunity Index (COI), and the Social Vulnerability Index (SVI) are potential proxies for social determinants of health and could help researchers, public health practitioners, and clinicians identify neighborhoods or populations most likely to experience adverse outcomes. However, evidence regarding their relationship with health care use, especially in the pediatric population with cancer, remains mixed. Objective: We sought to evaluate the relationship between emergency department (ED) visits and hospitalizations with these area-level indices in our study population. Methods: We conducted a cross-sectional study of pediatric patients with brain and central nervous system tumors in a single Midwestern state who were diagnosed between 2010 and 2020. We fitted zero-inflated Poisson models for counts of ED and inpatient visits to determine if any of these use measures were associated with our 3 area-level indices. Finally, we mapped index quintiles onto neighborhoods to visualize and compare how each index differentially ranks neighborhoods. Results: Our study cohort consisted of 524 patients; 78.6% (n=412) of them had no recorded ED visit, and 39.7% (n=208) had no record of hospitalization. Moderate (coefficient=0.306; P=.01) and high (coefficient=0.315; P=.01) deprivation were associated with more ED visits. Both low child opportunity (coefficient=0.497; P<.001) and very high child opportunity (coefficient=0.328; P=.01) were associated with more ED visits. All quintiles of SVI were associated with ED visits, but the relationship was not dose-dependent. Low and very high deprivation were associated with hospitalizations, but COI and SVI were not. Additionally, by overlaying index quintiles onto census tracts and census block groups, we showed that most patients who had an ED visit lived in disadvantaged neighborhoods based on Area Deprivation Index rankings, but not necessarily COI or SVI rankings. Conclusions: Although indices provide useful context about the environment in which our patient population resides in, we found little evidence that neighborhood conditions as measured by these indices consistently or reliably relate to health care use. UR - https://publichealth.jmir.org/2025/1/e66834 UR - http://dx.doi.org/10.2196/66834 ID - info:doi/10.2196/66834 ER - TY - JOUR AU - Hou, J. Sharon H. AU - Henry, Brianna AU - Drummond, Rachelle AU - Forbes, Caitlin AU - Mendonça, Kyle AU - Wright, Holly AU - Rahamatullah, Iqra AU - Tutelman, R. Perri AU - Zwicker, Hailey AU - Stokoe, Mehak AU - Duong, Jenny AU - Drake, K. Emily AU - Erker, Craig AU - Taccone, S. Michael AU - Sutherland, Liam AU - Nathan, Paul AU - Spavor, Maria AU - Goddard, Karen AU - Reynolds, Kathleen AU - Schulte, M. Fiona S. PY - 2025/4/25 TI - Co-Designing Priority Components of an mHealth Intervention to Enhance Follow-Up Care in Young Adult Survivors of Childhood Cancer and Health Care Providers: Qualitative Descriptive Study JO - JMIR Cancer SP - e57834 VL - 11 KW - mobile health KW - mHealth KW - pediatric oncology KW - cancer survivorship KW - qualitative research KW - patient-oriented research KW - co-design KW - intervention development N2 - Background: Survivors of childhood cancer are at risk of medical, psychological, and social late effects. To screen for their risks, receipt of consistent, cancer-specific follow-up care is crucial. However, <50% of survivors attend their aftercare, and only 35% of them recognize that they could have a serious health problem. The use of mobile health (mHealth) is a promising form of intervention to educate, connect, and empower survivors of childhood cancer on the importance of follow-up care. Objective: This study aimed to use co-design to identify the priority components to include in an mHealth intervention with young adult (aged between 18 and 39 years) survivors of childhood cancer and health care providers. Methods: This study was conducted between January and November 2022 in Canada and used patient-oriented research methods. Participants were recruited through local or provincial long-term follow-up clinics, using convenience sampling from patient partners who assisted in recruiting survivors across geographical areas in western, central, and eastern Canada, and social media outreach (X, formally known as Twitter; Facebook; and Instagram). Qualitative descriptive data (focus group interviews) from survivors of childhood cancer and health care providers (individual interviews) were gathered. We analyzed the collected data using reflexive thematic analysis and verified it through member checking techniques through an online community engagement event. Results: We conducted with patient partners 5 online (Zoom) focus groups with 22 survivors of childhood cancer (mean age 29.19, SD 4.78 y). We conducted individual telephone interviews with 7 health care providers. Participants identified five priority areas to be included in an mHealth intervention: (1) connections, (2) education and information, (3) engagement, (4) personalization, and (5) resources. Results were shared with and validated by survivors of childhood cancer, their families, health care providers, and academic researchers as part of a community engagement event. Small and large group discussions were facilitated to allow participants to review and discuss the accuracy of the themes derived regarding the core components to be included in mHealth. A graphic recording artist visually captured key ideas from the event. A subset of the participants also completed a web-based satisfaction survey, and responses indicated that the community engagement event was generally well received. Conclusions: Results from this study have provided the necessary foundation to progress in intervention development. The next step of this multiphased project is to build an innovative and accessible mHealth intervention prototype that is based on the identified core components and is grounded in an established conceptual framework for co-design of mHealth. UR - https://cancer.jmir.org/2025/1/e57834 UR - http://dx.doi.org/10.2196/57834 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57834 ER - TY - JOUR AU - ?arkovi?, Ma?a AU - Schindera, Christina AU - Sommer, Grit AU - Schneider, Christine AU - Usemann, Jakob AU - Otth, Maria AU - Lüer, Sonja AU - Ansari, Marc AU - Latzin, Philipp AU - Kuehni, E. Claudia PY - 2025/4/8 TI - Assessing Pulmonary Function in Children and Adolescents After Cancer Treatment: Protocol for a Multicenter Cohort Study (Swiss Childhood Cancer Survivor Study FollowUp?Pulmo) JO - JMIR Res Protoc SP - e69743 VL - 14 KW - childhood cancer survivors KW - respiratory function tests KW - late effects KW - pulmonary toxicity KW - multiple breath washout test KW - cohort study N2 - Background: Childhood cancer survivors (CCS) are at risk of pulmonary dysfunction due to cancer treatments, but evidence on prevalence and risk factors remains limited. Most previous studies had small sample sizes or retrospective study designs, little information about treatments, or a lack of standardization of pulmonary function tests (PFTs) or limited their investigation to certain PFTs. Since spirometry mainly assesses the large airways but cancer therapy also affects peripheral airways, additional functional tests are needed. The nitrogen multiple breath washout test (N2MBW) is sensitive to peripheral airway damage in other patient populations, but its benefit in CCS is unknown. Therefore, comprehensive and standardized evaluation of pulmonary function after cancer treatment in childhood, using different PFTs that include N2MBW, is needed to address these knowledge gaps and provide insights into possible early stages of pulmonary dysfunction. Objective: In the Swiss Childhood Cancer Survivor Study (SCCSS) FollowUp?Pulmo, we will comprehensively assess lung function in children and adolescents after treatment for cancer to identify risk factors for pulmonary dysfunction, assess the ability of N2MBW to detect pulmonary dysfunction compared to other PFTs, and investigate the association of functional outcomes from PFTs with self-reported respiratory symptoms. Methods: SCCSS FollowUp?Pulmo is a prospective multicenter longitudinal cohort study embedded in routine clinical care that enrolls CCS aged 6-20 years for whom at least 1 year has passed since a childhood cancer diagnosis, who have completed treatment, and who attend regular pediatric oncological follow-up care. Inclusion criteria comprise any of the following: systemic anticancer treatment (chemotherapy, immunotherapy, or targeted agents), thoracic surgery, thoracic radiotherapy, or hematopoietic stem cell transplantation (HSCT). CCS undergo a standardized pulmonary assessment, including spirometry, body plethysmography, diffusing capacity of the lung for carbon monoxide (DLCO), and N2MBW, and complete a questionnaire on respiratory symptoms and lifestyle. Data from previous and subsequent routine care PFTs will be included in this study. Results: Recruitment started in June 2022 at the University Children?s Hospital Bern, Switzerland. Subsequently, patient recruitment expanded to the University Children?s Hospitals in Basel and Geneva, Switzerland. By October 2024, we had invited 220 patients, of which 201 have already participated in this study, resulting in a response rate of 91%. Their median age at the time of the study was 14 years (IQR 10-17), and the median time since diagnosis was 7 years (IQR 4-10). The study will continuously enroll new CCS. Conclusions: This study will contribute to a comprehensive understanding of pulmonary function in CCS and assess related risk factors, as well as the utility of N2MBW compared to other PFTs. The results will assist in the development of more targeted screening and risk-stratified follow-up care. Trial Registration: ClinicalTrials.gov NCT04732273; https://clinicaltrials.gov/study/NCT04732273 International Registered Report Identifier (IRRID): DERR1-10.2196/69743 UR - https://www.researchprotocols.org/2025/1/e69743 UR - http://dx.doi.org/10.2196/69743 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/69743 ER - TY - JOUR AU - Song, Gao AU - Zhang, Cai-qiong AU - Bai, Zhong-ping AU - Li, Rong AU - Cheng, Meng-qun PY - 2025/3/12 TI - Assisted Reproductive Technology and Risk of Childhood Cancer Among the Offspring of Parents With Infertility: Systematic Review and Meta-Analysis JO - JMIR Cancer SP - e65820 VL - 11 KW - assisted reproductive technology KW - childhood cancer KW - infertility KW - subfertile KW - risks KW - systematic review N2 - Background: The relationship between assisted reproductive technology (ART) and childhood cancer risk has been widely debated. Previous meta-analyses did not adequately account for the impact of infertility, and this study addresses this gap. Objective: Our primary objective was to assess the relative risk (RR) of childhood cancer in infertile populations using ART versus non-ART offspring, with a secondary focus on comparing frozen embryo transfer (FET) and fresh embryo transfer (fresh-ET). Methods: A literature review was conducted through PubMed, Embase, Cochrane, and Web of Science, with a cutoff date of July 10, 2024. The study was registered with the International Platform of Registered Systematic Review and Meta-Analysis Protocols (INPLASY 202470119). Inclusion criteria were based on the PICOS (Population, Intervention, Comparison, Outcomes, and Study Design) framework: infertile or subfertile couples (population), ART interventions (in vitro fertilization [IVF], intracytoplasmic sperm injection [ICSI], FET, and fresh-ET), non-ART comparison, and childhood cancer risk outcomes. Data abstraction focused on the primary exposures (ART vs non-ART and FET vs fresh-ET) and outcomes (childhood cancer risk). The risk of bias was assessed using the Newcastle-Ottawa Quality Assessment Scale, and the evidence quality was evaluated with the Grading of Recommendations Assessment, Development, and Evaluation (GRADE). Pooled estimates and 95% CIs were calculated using random effects models. Results: A total of 18 studies were included, published between 2000 and 2024, consisting of 14 (78%) cohort studies and 4 (22%) case-control studies, all of which were of moderate to high quality. The cohort studies had follow-up periods ranging from 3 to 18 years. Compared with non-ART conception, ART conception was not significantly associated with an increased risk of childhood overall cancer (RR 0.95, 95% CI 0.71?1.27; GRADE quality: low to moderate). Subgroup analyses of IVF (RR 0.86, 95% CI 0.59?1.25), ICSI (RR 0.76, 95% CI 0.26?2.2), FET (RR 0.98, 95% CI 0.54?1.76), and fresh-ET (RR 0.75, 95% CI 0.49?1.15) showed similar findings. No significant differences were found for specific childhood cancers, including leukemia (RR 0.99, 95% CI 0.79?1.24), lymphoma (RR 1.22, 95% CI 0.64?2.34), brain cancer (RR 1.22, 95% CI 0.73?2.05), embryonal tumors (RR 1, 95% CI 0.63?1.58), retinoblastoma (RR 1.3, 95% CI 0.73?2.31), and neuroblastoma (RR 1.02, 95% CI 0.48?2.16). Additionally, no significant difference was observed in a head-to-head comparison of FET versus fresh-ET (RR 0.99, 95% CI 0.86?1.14; GRADE quality: moderate). Conclusions: In conclusion, this study found no significant difference in the risk of childhood cancer between offspring conceived through ART and those conceived through non-ART treatments (such as fertility drugs or intrauterine insemination) in infertile populations. While infertility treatments may elevate baseline risks, our findings suggest that whether individuals with infertility conceive using ART or non-ART methods, their offspring do not face a significantly higher risk of childhood cancer. Further research, especially comparing infertile populations who conceive naturally, is needed to better understand potential long-term health outcomes. Trial Registration: INPLASY 202470119; https://inplasy.com/?s=202470119 UR - https://cancer.jmir.org/2025/1/e65820 UR - http://dx.doi.org/10.2196/65820 ID - info:doi/10.2196/65820 ER - TY - JOUR AU - Reuther, Christina AU - von Essen, Louise AU - Mustafa, Imran Mudassir AU - Saarijärvi, Markus AU - Woodford, Joanne PY - 2025/1/28 TI - Engagement With an Internet-Administered, Guided, Low-Intensity Cognitive Behavioral Therapy Intervention for Parents of Children Treated for Cancer: Analysis of Log-Data From the ENGAGE Feasibility Trial JO - JMIR Form Res SP - e67171 VL - 9 KW - childhood cancer survivor KW - cognitive behavioral therapy KW - engagement KW - internet-administered intervention KW - log-data KW - parents N2 - Background: Parents of children treated for cancer may experience psychological difficulties including depression, anxiety, and posttraumatic stress. Digital interventions, such as internet-administered cognitive behavioral therapy, offer an accessible and flexible means to support parents. However, engagement with and adherence to digital interventions remain a significant challenge, potentially limiting efficacy. Understanding factors influencing user engagement and adherence is crucial for enhancing the acceptability, feasibility, and efficacy of these interventions. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy (LICBT)?based self-help intervention for parents of children treated for cancer, (EJDeR [internetbaserad självhjälp för föräldrar till barn som avslutat en behandling mot cancer or internet-based self-help for parents of children who have completed cancer treatment]). EJDeR included 2 LICBT techniques?behavioral activation and worry management. Subsequently, we conducted the ENGAGE feasibility trial and EJDeR was found to be acceptable and feasible. However, intervention adherence rates were marginally under progression criteria. Objective: This study aimed to (1) describe user engagement with the EJDeR intervention and examine whether (2) sociodemographic characteristics differed between adherers and nonadherers, (3) depression and anxiety scores differed between adherers and nonadherers at baseline, (4) user engagement differed between adherers and nonadherers, and (5) user engagement differed between fathers and mothers. Methods: We performed a secondary analysis of ENGAGE data, including 71 participants. User engagement data were collected through log-data tracking, for example, communication with e-therapists, homework submissions, log-ins, minutes working with EJDeR, and modules completed. Chi-square tests examined differences between adherers and nonadherers and fathers and mothers concerning categorical data. Independent-samples t tests examined differences regarding continuous variables. Results: Module completion rates were higher among those who worked with behavioral activation as their first LICBT module versus worry management. Of the 20 nonadherers who opened the first LICBT module allocated, 30% (n=6) opened behavioral activation and 70% (n=14) opened worry management. No significant differences in sociodemographic characteristics were found. Nonadherers who opened behavioral activation as the first LICBT module allocated had a significantly higher level of depression symptoms at baseline than adherers. No other differences in depression and anxiety scores between adherers and nonadherers were found. Minutes working with EJDeR, number of log-ins, days using EJDeR, number of written messages sent to e-therapists, number of written messages sent to participants, and total number of homework exercises submitted were significantly higher among adherers than among nonadherers. There were no significant differences between fathers and mothers regarding user engagement variables. Conclusions: Straightforward techniques, such as behavioral activation, may be well-suited for digital delivery, and more complex techniques, such as worry management, may require modifications to improve user engagement. User engagement was measured behaviorally, for example, through log-data tracking, and future research should measure emotional and cognitive components of engagement. Trial Registration: ISRCTN Registry 57233429; https://doi.org/10.1186/ISRCTN57233429 UR - https://formative.jmir.org/2025/1/e67171 UR - http://dx.doi.org/10.2196/67171 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/67171 ER - TY - JOUR AU - Lai, Byron AU - Chaviano, Kelli AU - Richman, S. Joshua AU - Ahmad, Mahmoud AU - Wright, Ashley AU - Young, Raven AU - Davis, Drew AU - Rimmer, H. James AU - Madan-Swain, Avi AU - Chewning, H. Joseph PY - 2024/12/23 TI - Extended Reality Gaming for Exercise and Mindfulness Throughout Pediatric Cancer Rehabilitation: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e64879 VL - 13 KW - oncology KW - rehabilitation KW - bone marrow transplant KW - virtual reality KW - VR KW - physical activity KW - exercise KW - extended reality KW - XR KW - pediatric cancer N2 - Background: Pediatric patients with cancer have limited options to self-manage their health while they are undergoing treatments in the hospital and after they are discharged to their homes. Extended reality (ER) using head-mounted displays has emerged as an immersive method of improving pain and mental health and promoting health-enhancing physical activity among a variety of clinical groups, but there is currently no established protocol for improving both physical and mental health in pediatric cancer rehabilitation. Objective: This phase I, pilot, feasibility randomized controlled trial aims to investigate the potential effects of a 14-week ER program on physical activity participation and indicators of health among pediatric patients with cancer who undergo bone marrow transplantation. An ancillary aim is to evaluate the feasibility of the program through participant engagement. Methods: This study includes a 2-arm parallel group design with a 1-group crossover (the control group will start the intervention after a waiting period). Overall, 16 pediatric patients with cancer undergoing rehabilitation (aged ?8 years) at a children?s hospital will be randomly allocated into one of two groups: (1) an immediate start group that undergoes an ER program in the hospital until discharge and then for 8 weeks at home (total duration of approximately 14 weeks), and (2) a waitlist control group that undergoes usual care in the hospital and for 8 weeks at home, before receiving the 8-week home ER program. The program will include active video gaming with rhythmic music exercises as well as mindfulness-based practices using a high-quality app. Home-based programming will include behavioral coaching calls. Physical activity will be measured daily through step counts using a tri-axial accelerometer. Health outcomes will be measured across time and include global health, measured by the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Global Health Scale Short Form 7+2, and lung function, measured by a forced expiratory volume using a peak flow meter. Feasibility will be evaluated through participant engagement metrics, such as enrollment, dropout, adverse events, and attendance rates. Descriptive statistics will be obtained for all study variables. Outcomes will be modeled using mixed modeling procedures, and changes in means will be estimated with CIs. Results: The study was funded in February 2024. Recruitment procedures started on June 27, 2024. All data are anticipated to be collected by February 2026. Full trial results are anticipated to be analyzed and submitted for publication by March 2026. The study?s anticipated end date is March 31, 2026. Conclusions: This trial tests an accessible remote program for improving both physical and mental health among pediatric patients with cancer. The knowledge obtained from this study will inform the development of a larger trial. Trial Registration: ClinicalTrials.gov NCT06298357; https://clinicaltrials.gov/study/NCT06298357 International Registered Report Identifier (IRRID): DERR1-10.2196/64879 UR - https://www.researchprotocols.org/2024/1/e64879 UR - http://dx.doi.org/10.2196/64879 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64879 ER - TY - JOUR AU - Lazard, J. Allison AU - Vereen, N. Rhyan AU - Zhou, Jieni AU - Nichols, B. Hazel AU - Pulido, Marlyn AU - Swift, Catherine AU - Dasgupta, Nabarun AU - Fredrickson, L. Barbara PY - 2024/12/20 TI - Designing Positive Psychology Interventions for Social Media: Cross-Sectional Web-Based Experiment With Young Adults With Cancer JO - JMIR Cancer SP - e48627 VL - 10 KW - young adult KW - cancer survivors KW - social media KW - positive psychology KW - acceptability KW - feasibility KW - youth KW - cancer KW - psychosocial KW - self-efficacy KW - social connection KW - positive emotion KW - emotion KW - social engagement N2 - Background: Young adults (ages 18?39 years) with cancer face unique risks for negative psychosocial outcomes. These risks could be lessened with positive psychology interventions adapted for social media if intervention messages encourage intentions to do the activities and positive message reactions and if young adults with cancer perceive few downsides. Objective: This study aimed to assess whether social media messages from evidence-based positive psychology interventions encouraged intentions to do the intervention activities and intended positive message reactions, overall and among sociodemographic or cancer characteristic subgroups. We also aimed to identify perceived downsides of the activity that would negatively impact the interventions? feasibility. Methods: Young adults (ages 18?39 years, cancer diagnosis ages 15?39 years) were randomized to a between-persons web-based experiment. Participants viewed a social media message with social context cues (vs not) for 1 of 2 types of intervention (acts of kindness vs social connectedness). Participants reported intentions to do the activity, along with their perceived social presence in the message (how much they felt the sense of others) and forecasted positivity resonance (whether they would experience socially connected positive emotions when doing the activity), with 5-point items. Participants also reported their self-efficacy (how certain they can do the intervention activity) with a 0?100 item and potential downsides of the activity categorically. Results: More than 4 out of 5 young adults with cancer (N=396) reported they ?somewhat? (coded as 3) to ?extremely? (5) intended to do the intervention activity (336/396, 84.8%; mean ranged from 3.4?3.6, SD 0.9-1.0), perceived social presence in the messages (350/396, 88.4%; mean 3.8, SD 0.7), and forecasted positivity resonance (349/396, 88.1%; mean 3.8?3.9, SD 0.8). Participants reported having self-efficacy to complete the activity (mean 70.7% of possible 100%, SD 15.4%?17.2%). Most (320/396, 80.8%) did not think of the downsides of the interventions. Messages with social context cues (vs not) and both intervention types were rated similarly (all P>.05). Black young adults reported lower intentions, perceived social presence, and forecasted positivity resonance than White young adults (all P<.001). Participants in active treatment (vs completed) reported greater intentions to do the activities (P<.001). Conclusions: Positive psychology intervention messages adapted for social media were perceived as acceptable and feasible among young adults with cancer. The social media?based messages encouraged increasing one?s social connectedness and performing acts of kindness. Young adults with cancer also predicted they would have feelings of positive social engagement (positivity resonance) when doing the interventions?the key ingredient for experiencing the health benefits of these activities. This study provides promising evidence for the development of age-appropriate, highly scalable interventions to improve psychosocial health among young adults with cancer. UR - https://cancer.jmir.org/2024/1/e48627 UR - http://dx.doi.org/10.2196/48627 ID - info:doi/10.2196/48627 ER - TY - JOUR AU - Mueller, L. Emily AU - Cochrane, R. Anneli AU - Campbell, E. Madison AU - Nikkhah, Sarah AU - Holden, J. Richard AU - Miller, D. Andrew PY - 2024/10/17 TI - An mHealth App to Support Caregivers in the Medical Management of Their Child With Cancer: Beta Stage Usability Study JO - JMIR Cancer SP - e52128 VL - 10 KW - oncology KW - supportive care KW - mHealth KW - children KW - caregivers KW - mobile phones N2 - Background: Previous research demonstrated that caregivers of children with cancer desired a mobile health (mHealth) tool to aid them in the medical management of their child. Prototyping and alpha testing of the Cope 360 app (Commissioning Agents, Inc) resulted in improvements in the ability to track symptoms, manage medications, and prepare for urgent medical needs. Objective: This study aims to engage caregivers of children with cancer in beta testing of a smartphone app for the medical management of children with cancer, assess acceptance, identify caregivers? perceptions and areas for improvement, and validate the app?s design concepts and use cases. Methods: In this pilot, study caregivers of children with cancer used the Cope 360 mHealth app for 1 week, with the goal of daily logging. Demographics and a technology acceptance survey were obtained from each participant. Recorded semistructured interviews were transcribed and analyzed iteratively using NVivo (version 12, QSR International) and analyzed for information on usage, perceptions, and suggestions for improvement. Results: A total of 10 caregivers participated in beta testing, primarily women (n=8, 80%), married, with some college education, and non-Hispanic White (n=10, 100%). The majority of participants (n=7, 70%) had children with acute lymphocytic leukemia who were being treated with chemotherapy only (n=8, 80%). Overall, participants had a favorable opinion of Cope 360. Almost all participants (n=9, 90%) believed that using the app would improve their ability to manage their child?s medical needs at home. All participants reported that Cope 360 was easy to use, and most would use the app if given the opportunity (n=8, 80%). These values indicate that the app had a high perceived ease of use with well-perceived usefulness and behavioral intention to use. Key topics for improvement were identified including items that were within the scope of change and others that were added to a future wish list. Changes that were made based on caregiver feedback included tracking or editing all oral and subcutaneous medications and the ability to change the time of a symptom tracked or medication administered if unable to do so immediately. Wish list items included adding a notes section, monitoring skin changes, weight and nutrition tracking, and mental health tracking. Conclusions: The Cope 360 app was well received by caregivers of children with cancer. Our validation testing suggests that the Cope 360 app is ready for testing in a randomized controlled trial to assess outcome improvements. UR - https://cancer.jmir.org/2024/1/e52128 UR - http://dx.doi.org/10.2196/52128 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/52128 ER - TY - JOUR AU - Deribe, Leul AU - Girma, Eshetu AU - Lindström, Nataliya AU - Gidey, Abdulkadir AU - Teferra, Solomon AU - Addissie, Adamu PY - 2024/10/10 TI - Association of Family-Centered Care With Psychological Distress Among Caregivers of Children With Cancer at a Tertiary-Level Hospital in Ethiopia: Cross-Sectional Study JO - JMIR Cancer SP - e54715 VL - 10 KW - child cancer KW - psychological distress KW - Ethiopia KW - parent KW - caregivers KW - family N2 - Background: Psychological distress (PD) is a common mental health problem faced by caregivers of children with cancer. The involvement of families in childcare was found to be associated with lower levels of distress. Objective: The study aims to determine the associations between family-centered care (FCC) and PD among caregivers of children with cancer receiving treatment at Tikur Anbessa Specialized Hospital (TASH), Ethiopia. Methods: An institution-based, cross-sectional study was conducted from June to December 2022. Caregivers of children with cancer aged 0-14 years receiving cancer treatment at the pediatric oncology unit completed a face-to-face, interviewer-administered, structured questionnaire during a routine inpatient or outpatient visit. The questionnaire included questions on the characteristics of the child and caregiver, PD (measured by the Kessler Psychological Distress Scale [K10]), FCC (measured by the Measure of Processes of Care [MPOC-20]), and social support (measured by the Oslo-3 Social Support Scale [OSS-3]). Data were collected using the Kobo toolbox and exported to SPSS (version 26; IBM Corp) for cleaning and analysis. A multivariable logistic regression model was used. An odds ratio with a 95% CI was calculated, and a P value less than .05 was considered statistically significant. Results: A total of 384 caregivers of children with cancer participated in the study. The total PD score ranged from 10 to 50, with a mean score of 17.30 (SD 8.96; 95% CI 16.84-18.60). The proportion of caregivers found to have mild, moderate, and severe levels of PD was 43 (11.2%), 35 (9.1%), and 51 (13.3%), respectively. The overall prevalence of mild to severe PD symptoms was 33.6% (95% CI 28.9%-38.3%). A statistically significant negative association was found between FCC and PD (adjusted odds ratio [AOR] 0.68, 95% CI 0.53-0.86). In addition, having no formal education (AOR 2.87, 95% CI 1.28-6.45), having a history of relapse (AOR 3.24, 95% CI 1.17-9.02), beginning cancer treatment at TASH (AOR 2.82, 95% CI 1.4-4.85), beginning treatment within the last 3 months (AOR 3.99, 95% CI 1.73-9.23), and beginning treatment within the last 4 to 18 months (AOR 2.68, 95% CI 1.25-5.76) were significantly associated with higher level of PD. Conclusions: A total of 1 in 3 caregivers have reported PD. FCC was found to be protective of PD. The finding of this study suggests the need for FCC intervention to improve the mental health condition of caregivers. In addition, the intervention needs to consider the educational status of the caregivers, the time since the cancer diagnosis, and the history of relapse. UR - https://cancer.jmir.org/2024/1/e54715 UR - http://dx.doi.org/10.2196/54715 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54715 ER - TY - JOUR AU - Deribe, Leul AU - Girma, Eshetu AU - Lindström, Nataliya AU - Gidey, Abdulkadir AU - Teferra, Solomon AU - Addissie, Adamu PY - 2024/10/4 TI - Parent Education and Counseling (PairEd-C) Intervention to Improve Family-Centered Care: Protocol for a Prospective Acceptability Study Using the Theoretical Framework of Acceptability JO - JMIR Res Protoc SP - e54914 VL - 13 KW - family-centered care KW - child cancer KW - theoretical framework of acceptability KW - education and counseling KW - acceptability KW - parent education KW - family centered KW - care service KW - theoretical framework KW - study protocol KW - family KW - health care KW - well-being KW - children KW - implementation KW - design intervention N2 - Background: Family-centered care (FCC) is an intervention approach based on a respectful relationship between family and health care providers (HCPs) to ensure the health and well-being of children and their families. Although HCPs have a better perception of FCC, the level of its implementation is low. Reasons for low implementation include limited understanding, lack of training, and lack of implementation guidelines and tools to support implementation. Thus, we developed the Parent Education and Counseling (PairEd-C) intervention to improve FCC in pediatric oncology settings and assess its acceptability. Objective: The objective of this study is to assess the prospective acceptability of the PairEd-C intervention using the theoretical framework of acceptability (TFA) in the pediatric oncology department in a tertiary hospital in Ethiopia. Methods: The study was conducted using an exploratory qualitative study design. We aimed to recruit 10 to 15 participants for the in-depth interview. The study participants were health service leaders working in child cancer, HCPs, social workers, and parents of children with cancer. The intervention was developed using the integration of the first phase of the Medical Research Council (MRC) framework for developing and testing complex interventions and the behavior change wheel (BCW) framework. The main PairEd-C intervention components align with the intervention functions of education, persuasion, training, environmental restructuring, modeling, and enablement, which were intended to improve FCC in the pediatric oncology unit by providing structured and comprehensive education and counseling of parents of children with cancer. The intervention was implemented by providing training for the health care team, facilitating discussion among HCPs and setting a shared plan, improving the commitment of the health care team, providing education for parents, improving parents? capacity to attend the intervention sessions, arranging discussion among parents of children with cancer, and provision of education and counseling on distress. The HCPs working in the unit received training on the designed intervention. The trained educators and the health care provider delivered the intervention. Data will be analyzed using deductive thematic coding with a framework analysis technique based on the 7 TFA constructs. Atlas ti. version 9 will be used for data analysis. Results: Funding was acquired in 2017, and ethical clearance for conducting the study was obtained. We conducted the interviews with the study participants from December 2023 to January 2024. As of the acceptance of this protocol (June 2024), 12 study participants were interviewed. The data analysis process was started subsequently, and the manuscript will be completed and submitted for publication in early 2025. Conclusions: This acceptability study is expected to show that the designed intervention is acceptable to study participants, and the findings will be used to improve the intervention before progressing to the next step of our project. International Registered Report Identifier (IRRID): DERR1-10.2196/54914 UR - https://www.researchprotocols.org/2024/1/e54914 UR - http://dx.doi.org/10.2196/54914 UR - http://www.ncbi.nlm.nih.gov/pubmed/39365661 ID - info:doi/10.2196/54914 ER - TY - JOUR AU - Skeens, A. Micah AU - Jackson, I. Daniel AU - Sutherland-Foggio, S. Malcolm AU - Sezgin, Emre PY - 2024/10/1 TI - mHealth Apps in the Digital Marketplace for Pediatric Patients With Cancer: Systematic Search and Analysis JO - JMIR Pediatr Parent SP - e58101 VL - 7 KW - mHealth KW - mobile health KW - mobile application KW - mobile apps KW - digital health KW - digital technology KW - digital intervention KW - smartphones KW - cancer KW - oncology KW - pediatric cancer KW - paediatric cancer KW - pediatric oncology KW - paediatric oncology KW - systematic analysis KW - systematic analyses KW - review KW - mobile phone N2 - Background: The substantial increase in smartphone ownership has led to a rise in mobile health (mHealth) app use. Developing tailored features through mHealth apps creates a pathway to address the health care needs of pediatric patients with cancer and their families who have complex care needs. However, few apps are designed specifically to integrate with pediatric cancer care. Objective: This study reports a systematic search and analysis of mHealth apps available on the Apple App (iOS) and Google Play (Android) stores designed for pediatric cancer through a list of features that serve (1) patients, (2) caregivers, or (3) both audiences. Methods: Following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, we reviewed apps for pediatric patients with cancer and caregivers available as of January 30, 2024. We searched the Apple App and Google Play stores with a list of keyword combinations focusing on pediatric cancer care. The inclusion criteria were (1) specifically apps targeted toward pediatric patients with cancer, their families, or both; (2) available in either app store; and (3) available in English. Apps were assessed using the Mobile Application Rating Scale (MARS). The MARS is a quality assessment for mHealth apps, including components of engagement, functionality, aesthetics, and informational quality (5-point Likert scale items?1: low and 5: high quality). Results: In total, 22 apps were identified and 17 of those apps were available on both platforms. The most popular features (n=12) were resource sharing, symptom tracking, reminders, care team connections, journaling, community support, medication tracking, data visualizations, and appointment tracking. Features and interfaces were designed for caregivers (n=9) more frequently than the patients (n=7) while a subset of apps created options for both users (n=6). A total of 16 apps received positive reviews (mean 4.4, SD 0.59; Min=3.1, Max=5.0). A small subset (n=3) achieved over 5000 downloads; however, the majority (n=15) had fewer than 500. More than half (n=12) of the apps were not available in English. Apps requested access to a range of device functionalities to operate (mean 2.72, SD 3.13; Min=0, Max=10). Out of 22, a total of 17 apps were publicly accessible. The mean MARS scores for the apps ranged from 1.71 (SD 0.75) to 4.33 (SD 0.82). Overall, apps scored high on functionality (mean 3.72, SD 0.54) but low on engagement (mean 3.02, SD 0.93). Conclusions: Our review highlights the promising yet underdeveloped potential of mHealth apps in pediatric oncology care, underscoring the need for more inclusive, comprehensive, and integrative digital health solutions. Future developments should actively involve key stakeholders from the pediatric oncology community, including patients, families, and health care professionals, to ensure the apps meet specific needs while addressing linguistic and cultural barriers. UR - https://pediatrics.jmir.org/2024/1/e58101 UR - http://dx.doi.org/10.2196/58101 ID - info:doi/10.2196/58101 ER - TY - JOUR AU - Cederved, Catarina AU - Ljungman, Gustaf AU - Back, Jon AU - Ångström-Brännström, Charlotte AU - Engvall, Gunn PY - 2024/9/23 TI - Acceptability of a Serious Game About Proton Radiotherapy Designed for Children Aged 5 to 14 Years and Its Potential Impact on Perceived Anxiety: Feasibility and Randomized Controlled Pilot Trial JO - JMIR Serious Games SP - e54082 VL - 12 KW - anxiety KW - feasibility KW - acceptability KW - pediatric oncology KW - psychological preparation KW - proton radiotherapy KW - serious game KW - games KW - cancer N2 - Background: Children who are going to undergo radiotherapy have displayed fear and anxiety. Therefore, a web-based serious game was developed as a psychological preparation to investigate if it could affect anxiety levels. In an earlier stage, children with experience of radiotherapy had been part of the developmental process. Objective: The study aimed to investigate the feasibility in terms of reach, usability, and acceptability of a serious game about proton radiotherapy and to pilot that it did not increase anxiety levels in children aged 5 to 14 years undergoing radiotherapy. Methods: The design was a randomized controlled pilot trial with predefined feasibility criteria. In total, 28 children were assessed for eligibility, and 23 met the inclusion criteria. They were consecutively randomized into 1 of 2 study arms. One child was excluded after randomization. If randomized into arm 1, the children received the intervention before treatment started. Children in arm 2 were treated as controls. Questionnaires with fixed answers were used to assess anxiety levels (an adapted version of the State-Trait Anxiety Inventory for Children) and experiences of gameplay (an adapted version of Player Experience of Need Satisfaction [PENS]). The children were asked to answer questionnaires at 5 different measurement occasions during their radiotherapy treatment. Results: In arm 1, age ranged from 5 to 13 (mean 8.4, SD 2.4) years. In arm 2, age ranged from 5 to 11 (mean 7.6, SD 2.3) years. The sample consisted of 15 girls and 7 boys. The feasibility criterion that the children should play the game for 20 minutes or more was not met. Mean playtime for children in arm 1 was 32.1 (SD 23.8) minutes, where 18 children had played for at least 15 minutes. The criterion that 70% (n=16) or more of the participants should return all of the questionnaires was not met; however, more than 73% (n=16) returned the PENS questionnaires. The State-Trait Anxiety Inventory for Children was returned by 73% (n=16) on day 0, 77% (n=17) on day 1, 82% (n=18) on day 3, 82% (n=18) on day 6, and 86% (n=19) on day 15. Conclusions: All feasibility criteria set for the study were not met, suggesting that adaptions need to be made if a future study is to be undertaken. Further, the analysis revealed that there was no indication that playing increased the children?s self-reported anxiety. The PENS questionnaire adapted for children showed promising results regarding player satisfaction when using the serious game. When studying children with severe conditions and young age, 5 measurement occasions seemed to be too many. Measuring both player satisfaction or experience and knowledge transfer would be preferable in future studies. Trial Registration: ClinicalTrials.gov NCT04728555; https://clinicaltrials.gov/study/NCT04728555 UR - https://games.jmir.org/2024/1/e54082 UR - http://dx.doi.org/10.2196/54082 ID - info:doi/10.2196/54082 ER - TY - JOUR AU - Boensvang, Nybro Natasha AU - Weibel, Mette AU - Wakefield, E. Claire AU - Bidstrup, Envold Pernille AU - Olsen, Marianne AU - Nissen, Bækgaard Karin AU - Spager, Vibeke AU - Fridh, Kaj Martin AU - Larsen, Bækgaard Hanne PY - 2024/9/4 TI - Online Ambassador Visits for Hospitalized Children With Cancer: Qualitative Evaluation of Implementation JO - JMIR Pediatr Parent SP - e53309 VL - 7 KW - Children KW - cancer KW - school-aged KW - peers KW - interaction KW - online KW - in-hospital KW - social KW - relationship KW - quality of life KW - intervention KW - qualiative N2 - Background: Children with cancer or cancer-like disease risk treatment-related isolation, which can negatively impact their peer relationships and social competencies and exacerbate their loneliness. During the COVID-19 pandemic, increased online socialization became the new normal imposed by national isolation guidelines. To adhere to the treatment-related isolation guidelines, children with cancer were offered online classmate ?ambassador? visits during hospitalization. Objective: This study aimed to identify facilitators and barriers to online classmate ?ambassador? visits during children with cancer?s hospitalization through a qualitative descriptive process evaluation using the Consolidated Framework for Implementation Research. Methods: From January to April 2022, we conducted 39 individual semistructured interviews with hospitalized children (n=16), their classmates (n=16), teachers from their schools (n=3), and study nurses (n=4) from involved hospitals. Most interviews (n=37, 95%) were conducted online using Microsoft Teams or Google Meet, while 2 (5%) interviews were conducted in person at the participants? residences. This approach allowed us to gain a broad understanding of the facilitators and barriers to online ambassador visits. Results: We identified four themes: (1) working together, (2) ensuring participation, (3) staying connected, and (4) together online. The themes are described in terms of facilitators and barriers to online ambassador visits with 3 Consolidated Framework for Implementation Research domains: innovation, individuals, and the implementation process. Conclusions: Addressing the social needs of hospitalized children through online visits with their classmates may be relevant when one-on-one meetings are problematic. The online visits are highly dependent on collaboration between study nurses and teachers and assessing the needs of the hospitalized children. While a high degree of adult engagement and a stable internet connection are pivotal, these online visits can promote much-needed social interaction between children across physical settings. UR - https://pediatrics.jmir.org/2024/1/e53309 UR - http://dx.doi.org/10.2196/53309 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/53309 ER - TY - JOUR AU - Nygren, M. Jens AU - Aili, Katarina AU - Arvidsson, Susann AU - Olsson, Maria AU - Jarfelt, Marianne PY - 2024/8/12 TI - Charting Health Challenges for Digital Preventive Interventions Among Adult Survivors of Childhood Acute Lymphoblastic Leukemia: National Long-Term Follow-Up Survey of Self-Rated Health Outcomes JO - JMIR Form Res SP - e54819 VL - 8 KW - digital preventive interventions KW - long-term follow-up KW - self-rated health outcomes KW - adult survivors KW - childhood acute lymphoblastic leukemia N2 - Background: Acute lymphoblastic leukemia (ALL) is the most common malignancy in childhood, but the prognosis has remarkably improved over the last 50 years in high-income countries, and thus, there is a focus on long-term health outcomes following survival and how to best provide health care support to adult long-term survivors of childhood ALL to prevent and handle potential health problems. Digital health interventions are promising to deliver feasible health promotion and prevention programs. This is particularly relevant for ensuring long-term follow-up in cases where continuous contact with oncology care may be disrupted. Moreover, these interventions are beneficial in reaching geographically dispersed target groups and overcoming the time constraints of everyday life that often hinder participation in such programs. Objective: This study aimed to fill the gaps in existing research on adult long-term survivors of childhood ALL and provide formative data that can inform the development of formalized follow-up services designed to meet the needs of these survivors in ways that align with their preferences for digital health interventions. Methods: In this cross-sectional national study, adult survivors (aged ?18 years) of childhood ALL for over 10 years after diagnosis were compared to their siblings in terms of mental and physical health-related factors, including sleep, stress, anxiety, and depression (Depression Anxiety and Stress Scale 21 [DASS-21]); several dimensions of fatigue (Multidimensional Fatigue Inventory 20 [MFI-20]); work ability (Work Ability Index); chronic pain; and prevalences of diabetes, cardiovascular disease, headache or migraine, and rheumatic disease. Results: Overall, 426 of 855 eligible ALL survivors responded (mean age 30.9, SD 7.7 years), and they participated at an average of 24 (SD 6.9) years after ALL diagnosis. Siblings (n=135; mean age 31.5, SD 7.7 years) acted as controls. Sleep quality, sleep quantity, and mean work ability scores were significantly lower, and physical fatigue, reduced motivation, and reduced activity scores were higher in ALL survivors than in siblings. There were no significant differences between the groups in terms of BMI and prevalence of chronic pain, depression, anxiety, or stress. Physical and psychological complications were more frequent among adult ALL survivors who had received hematopoietic stem cell transplantation (HSCT) than among those who had not received HSCT. Conclusions: Our nationwide cross-sectional study addressed the scarcity of knowledge regarding the self-reported health outcomes of adult long-term survivors of childhood ALL. We highlighted significant disparities within this population and emphasized the potential of comprehensive digital interventions that target vitality, sleep quality, fatigue, and psychosocial well-being to enhance well-being and bolster the capacity for managing chronic health conditions in this target group. Such an intervention would align with the needs of this target group, which is a prerequisite for successfully incorporating technology into the daily lives of survivors of childhood ALL. UR - https://formative.jmir.org/2024/1/e54819 UR - http://dx.doi.org/10.2196/54819 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54819 ER - TY - JOUR AU - Lau, Nancy AU - Palermo, M. Tonya AU - Zhou, Chuan AU - Badillo, Isabel AU - Hong, Shannon AU - Aalfs, Homer AU - Yi-Frazier, P. Joyce AU - McCauley, Elizabeth AU - Chow, J. Eric AU - Weiner, J. Bryan AU - Ben-Zeev, Dror AU - Rosenberg, R. Abby PY - 2024/7/30 TI - Mobile App Promoting Resilience in Stress Management for Adolescents and Young Adults With Cancer: Protocol for a Pilot Randomized Controlled Trial JO - JMIR Res Protoc SP - e57950 VL - 13 KW - adolescents KW - young adult KW - cancer KW - mHealth KW - psychosocial intervention KW - stress management KW - coping KW - resilience KW - health-related quality of life KW - randomized controlled trial KW - mobile phone N2 - Background: Adolescents and young adults (AYAs) with cancer are at risk of poor psychosocial outcomes. AYAs grew up with the internet and digital technology, and mobile Health (mHealth) psychosocial interventions have the potential to overcome care access barriers. Objective: This pilot randomized controlled trial (RCT) aimed to establish the feasibility, acceptability, and preliminary efficacy of a fully automated mobile app version of the Promoting Resilience in Stress Management intervention (mPRISM). Promoting Resilience in Stress Management is an evidence-based intervention developed in collaboration with AYAs, based on stress and coping theory, resilience theory, and evidence-based coping strategies. We hypothesized that mPRISM would be feasible, acceptable, and appropriate. Methods: This is a parallel, 2-arm, single-site pilot RCT with a waitlist control design. The study will recruit 80 AYAs with cancer from a clinic. Eligible AYAs are aged 12 to 25 years, within 12 months of a new cancer diagnosis, receiving chemotherapy or radiation therapy, speak, read, or write in English, and are cognitively able to participate in study procedures. Recruitment by clinical research coordinators will occur remotely by phone, video, or text. Participants will be randomized to psychosocial usual care (UC) alone or UC plus mPRISM for an 8-week intervention period, and will remain unblinded to study condition. Enrolled participants will complete surveys at baseline before randomization, 8 weeks, and 3-month follow-up. Using a waitlist design, the UC arm will receive mPRISM upon completion of 3-month follow-up surveys. Those in the UC arm will complete 2 additional measurement points at immediate posttreatment and 3 months later. The primary outcomes of interest are feasibility, defined as ?60% enrollment and ?70% retention (ie, percentage of participants who completed the study), and ?feasibility, acceptability, and appropriateness? as defined by cut-off scores ?4/5 on 3 brief validated implementation outcome measures (feasibility of implementation measure, acceptability of intervention measure [AIM], intervention appropriateness measure [IAM]). We will apply top-box scoring for the implementation measures. Exploratory outcomes of interest include patient-reported health-related quality of life, resilience, distress, anxiety, depression, pain, and sleep. We will conduct an intention-to-treat analysis to compare the outcomes of the mPRISM arm versus the control arm with covariate-adjusted regression models. We will summarize individual digital usage metrics using descriptive statistics. Results: Since September 2023, we have enrolled 20 participants and recruitment is ongoing. Conclusions: Although our previous work suggests AYAs with cancer are interested in mHealth psychosocial interventions, such interventions have not yet been sufficiently evaluated or implemented among AYA oncology patients. mPRISM may serve as a potential mHealth intervention to fill this gap. In this study, we will test the feasibility, acceptability, and preliminary efficacy of mPRISM. This work will inform future larger-scale RCTs powered for efficacy outcomes. Trial Registration: ClinicalTrials.gov NCT05842902; https://clinicaltrials.gov/study/NCT05842902 International Registered Report Identifier (IRRID): DERR1-10.2196/57950 UR - https://www.researchprotocols.org/2024/1/e57950 UR - http://dx.doi.org/10.2196/57950 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57950 ER - TY - JOUR AU - Weile, Synne Kathrine AU - Mathiasen, René AU - Winther, Falck Jeanette AU - Hasle, Henrik AU - Henriksen, Tram Louise PY - 2024/7/25 TI - Hjernetegn.dk?The Danish Central Nervous System Tumor Awareness Initiative Digital Decision Support Tool: Design and Implementation Report JO - JMIR Med Inform SP - e58886 VL - 12 KW - digital health initiative KW - digital health initiatives KW - clinical decision support KW - decision support KW - decision support system KW - decision support systems KW - decision support tool KW - decision support tools KW - diagnostic delay KW - awareness initiative KW - pediatric neurology KW - pediatric CNS tumors KW - CNS tumor KW - CNS tumour KW - CNS tumours KW - co-creation KW - health systems and services KW - communication KW - central nervous system N2 - Background: Childhood tumors in the central nervous system (CNS) have longer diagnostic delays than other pediatric tumors. Vague presenting symptoms pose a challenge in the diagnostic process; it has been indicated that patients and parents may be hesitant to seek help, and health care professionals (HCPs) may lack awareness and knowledge about clinical presentation. To raise awareness among HCPs, the Danish CNS tumor awareness initiative hjernetegn.dk was launched. Objective: This study aims to present the learnings from designing and implementing a decision support tool for HCPs to reduce diagnostic delay in childhood CNS tumors. The aims also include decisions regarding strategies for dissemination and use of social media, and an evaluation of the digital impact 6 months after launch. Methods: The phases of developing and implementing the tool include participatory co-creation workshops, designing the website and digital platforms, and implementing a press and media strategy. The digital impact of hjernetegn.dk was evaluated through website analytics and social media engagement. Implementation (Results): hjernetegn.dk was launched in August 2023. The results after 6 months exceeded key performance indicators. The analysis showed a high number of website visitors and engagement, with a plateau reached 3 months after the initial launch. The LinkedIn campaign and Google Search strategy also generated a high number of impressions and clicks. Conclusions: The findings suggest that the initiative has been successfully integrated, raising awareness and providing a valuable tool for HCPs in diagnosing childhood CNS tumors. The study highlights the importance of interdisciplinary collaboration, co-creation, and ongoing community management, as well as broad dissemination strategies when introducing a digital support tool. UR - https://medinform.jmir.org/2024/1/e58886 UR - http://dx.doi.org/10.2196/58886 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58886 ER - TY - JOUR AU - Kim, Sunghak AU - Wilson, Paije AU - Abraham, Olufunmilola PY - 2024/7/10 TI - Investigating the Use of Serious Games for Cancer Control Among Children and Adolescents: Scoping Review JO - JMIR Serious Games SP - e58724 VL - 12 KW - serious games KW - cancer control KW - children KW - adolescents KW - scoping review KW - game KW - games KW - gaming KW - cancer KW - oncology KW - pediatric KW - pediatrics KW - paediatric KW - paediatrics KW - child KW - youth KW - adolescent KW - teen KW - teens KW - teenager KW - teenagers KW - synthesis KW - review methods KW - review methodology KW - search KW - searches KW - searching KW - scoping N2 - Background: Effective health care services that meet the diverse needs of children and adolescents with cancer are required to alleviate their physical, psychological, and social challenges and improve their quality of life. Previous studies showed that serious games help promote people?s health. However, the potential for serious games to be used for successful cancer control for children and adolescents has received less attention. Objective: This scoping review aimed to map the use of serious games in cancer prevention and cancer care for children and adolescents, and provide future directions for serious games? development and implementation within the context of cancer control for children and adolescents. Methods: This study followed a combination of the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) and the JBI (Joanna Briggs Institute) framework for the conduct of scoping reviews. PubMed, CINAHL Plus Full Text, Scopus, Web of Science Core Collection, and American Psychological Association (APA) PsycINFO databases were used for the search. Results: From the initial 2750 search results, 63 papers were included in the review, with 28 quantitative, 14 qualitative, and 21 mixed method studies. Most of the studies were cancer care serious game papers (55/63, 87%) and a small number of studies were cancer prevention serious game papers (8/63, 13%). The majority of the included studies were published between 2019 and 2023 (cancer prevention: 5/8, 63%; cancer care: 35/55, 64%). The majority of the studies were conducted in Europe (cancer prevention: 3/8, 38%; cancer care: 24/55, 44%) and North America (cancer prevention: 4/8, 50%; cancer care: 17/55, 31%). Adolescents were the most represented age group in the studies? participants (cancer prevention: 8/8, 100%; cancer care: 46/55, 84%). All (8/8, 100%) cancer prevention serious game papers included healthy people as participants, and 45 out of 55 (82%) cancer care serious game papers included patients with cancer. The majority of cancer prevention serious game papers addressed game preference as a target outcome (4/8, 50%). The majority of cancer care serious game papers addressed symptom management as a target outcome (28/55, 51%). Of the cancer care studies examining serious games for symptom management, the majority of the studies were conducted to treat psychological (13/55, 24%) and physical symptoms (10/55, 18%). Conclusions: This review shows both the growth of interest in the use of serious games for cancer control among children and adolescents and the potential for bias in the relevant literature. The diverse characteristics of the included papers suggest that serious games can be used in various ways for cancer control among children and adolescents while highlighting the need to develop and implement serious games in underrepresented areas. UR - https://games.jmir.org/2024/1/e58724 UR - http://dx.doi.org/10.2196/58724 UR - http://www.ncbi.nlm.nih.gov/pubmed/38985502 ID - info:doi/10.2196/58724 ER - TY - JOUR AU - Abraham, Olufunmilola AU - McCarthy, J. Tyler PY - 2024/5/29 TI - An Introduction to the OutSMART Cancer Serious Game: Current and Future Directions JO - JMIR Cancer SP - e56168 VL - 10 KW - serious game KW - cancer KW - health education KW - adolescents KW - health behavior KW - United States KW - young people KW - adolescent KW - teenager KW - teenagers KW - cancer prevention KW - education KW - cancer risk KW - tool KW - OutSMART Cancer KW - innovative KW - game development KW - cancer awareness KW - prevention KW - wellness UR - https://cancer.jmir.org/2024/1/e56168 UR - http://dx.doi.org/10.2196/56168 UR - http://www.ncbi.nlm.nih.gov/pubmed/38809587 ID - info:doi/10.2196/56168 ER - TY - JOUR AU - de Beijer, E. Ismay A. AU - van den Oever, R. Selina AU - Charalambous, Eliana AU - Cangioli, Giorgio AU - Balaguer, Julia AU - Bardi, Edit AU - Alfes, Marie AU - Cañete Nieto, Adela AU - Correcher, Marisa AU - Pinto da Costa, Tiago AU - Degelsegger-Márquez, Alexander AU - Düster, Vanessa AU - Filbert, Anna-Liesa AU - Grabow, Desiree AU - Gredinger, Gerald AU - Gsell, Hannah AU - Haupt, Riccardo AU - van Helvoirt, Maria AU - Ladenstein, Ruth AU - Langer, Thorsten AU - Laschkolnig, Anja AU - Muraca, Monica AU - Pluijm, F. Saskia M. AU - Rascon, Jelena AU - Schreier, Günter AU - Tomá?ikova, Zuzana AU - Trauner, Florian AU - Trink?nas, Justas AU - Trunner, Kathrin AU - Uyttebroeck, Anne AU - Kremer, M. Leontien C. AU - van der Pal, H. Helena J. AU - Chronaki, Catherine AU - PY - 2024/5/2 TI - IT-Related Barriers and Facilitators to the Implementation of a New European eHealth Solution, the Digital Survivorship Passport (SurPass Version 2.0): Semistructured Digital Survey JO - J Med Internet Res SP - e49910 VL - 26 KW - pediatric oncology KW - long-term follow up care KW - survivorship KW - cancer survivors KW - Survivorship Passport KW - SurPass, eHealth KW - information and technology N2 - Background: To overcome knowledge gaps and optimize long-term follow-up (LTFU) care for childhood cancer survivors, the concept of the Survivorship Passport (SurPass) has been invented. Within the European PanCareSurPass project, the semiautomated and interoperable SurPass (version 2.0) will be optimized, implemented, and evaluated at 6 LTFU care centers representing 6 European countries and 3 distinct health system scenarios: (1) national electronic health information systems (EHISs) in Austria and Lithuania, (2) regional or local EHISs in Italy and Spain, and (3) cancer registries or hospital-based EHISs in Belgium and Germany. Objective: We aimed to identify and describe barriers and facilitators for SurPass (version 2.0) implementation concerning semiautomation of data input, interoperability, data protection, privacy, and cybersecurity. Methods: IT specialists from the 6 LTFU care centers participated in a semistructured digital survey focusing on IT-related barriers and facilitators to SurPass (version 2.0) implementation. We used the fit-viability model to assess the compatibility and feasibility of integrating SurPass into existing EHISs. Results: In total, 13/20 (65%) invited IT specialists participated. The main barriers and facilitators in all 3 health system scenarios related to semiautomated data input and interoperability included unaligned EHIS infrastructure and the use of interoperability frameworks and international coding systems. The main barriers and facilitators related to data protection or privacy and cybersecurity included pseudonymization of personal health data and data retention. According to the fit-viability model, the first health system scenario provides the best fit for SurPass implementation, followed by the second and third scenarios. Conclusions: This study provides essential insights into the information and IT-related influencing factors that need to be considered when implementing the SurPass (version 2.0) in clinical practice. We recommend the adoption of Health Level Seven Fast Healthcare Interoperability Resources and data security measures such as encryption, pseudonymization, and multifactor authentication to protect personal health data where applicable. In sum, this study offers practical insights into integrating digital health solutions into existing EHISs. UR - https://www.jmir.org/2024/1/e49910 UR - http://dx.doi.org/10.2196/49910 UR - http://www.ncbi.nlm.nih.gov/pubmed/38696248 ID - info:doi/10.2196/49910 ER - TY - JOUR AU - Schilstra, E. Clarissa AU - Ellis, J. Sarah AU - Cohen, Jennifer AU - Gall, Alana AU - Diaz, Abbey AU - Clarke, Kristina AU - Dumlao, Gadiel AU - Chard, Jennifer AU - Cumming, M. Therese AU - Davis, Esther AU - Dhillon, Haryana AU - Burns, Anne Mary AU - Docking, Kimberley AU - Koh, Eng-Siew AU - O'Reilly, Josephine AU - Sansom-Daly, M. Ursula AU - Shaw, Joanne AU - Speers, Nicole AU - Taylor, Natalie AU - Warne, Anthea AU - Fardell, E. Joanna PY - 2024/3/25 TI - Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study JO - JMIR Cancer SP - e47944 VL - 10 KW - adolescent KW - cancer KW - education KW - employment KW - information needs KW - oncology KW - online information KW - quality of life KW - resource KW - return to work KW - school KW - study KW - supportive resources KW - treatment KW - young adult N2 - Background: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs? financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. Objective: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. Methods: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. Results: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. Conclusions: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive. UR - https://cancer.jmir.org/2024/1/e47944 UR - http://dx.doi.org/10.2196/47944 UR - http://www.ncbi.nlm.nih.gov/pubmed/38526527 ID - info:doi/10.2196/47944 ER - TY - JOUR AU - Bentsen, Line AU - Hanghøj, Signe AU - Hjerming, Maiken AU - Bergmann, Buur Mette AU - Thycosen, Marianne AU - Borup, Anette AU - Larsen, Camilla AU - Pappot, Helle PY - 2023/12/4 TI - Development of Quality of Life in Adolescents and Young Adults With Cancer Using a Patient Support Smartphone App: Prepost Interventional Study JO - JMIR Cancer SP - e49735 VL - 9 KW - adolescent KW - young adult KW - cancer KW - quality of life KW - eHealth KW - smartphone application KW - application KW - development KW - interventional study KW - youth KW - grief KW - symptom tracker KW - social community KW - Denmark KW - physical functioning KW - treatment KW - mobile phone N2 - Background: Adolescents and young adults often experience existential concerns in addition to side effects during a cancer trajectory, which they often carry alone. Thus, cohesion with other adolescents and young adults with cancer is essential but difficult due to the relatively small, widely dispersed nationwide population. In cocreation, a smartphone app has been developed and includes an information bank, a symptom tracker, and a social community platform, aiming to improve the quality of life (QoL) in this patient group. Objective: This nationwide, multicenter study aimed to investigate the QoL in adolescents and young adults undergoing a cancer trajectory as they used the app for 6 weeks. Methods: Via youth support initiatives, participants were recruited from hospitals in all regions of Denmark. Inclusion criteria were patients with cancer aged 15-29 years who either initiated any cancer treatment or started follow-up after cancer treatment within 30 days. Participants used the adolescents and young adults cancer app for 6 weeks. Before and after the 6 weeks of app use, they completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). The participants were divided into a treatment and a follow-up group for analysis. A high score for a functional scale or the global health or overall QoL represents a high or healthy level of functioning or high QoL, respectively; however, a high score for a symptom scale or item represents a high level of symptomatology. Results: Overall, 81 participants were recruited. However, 4 participants did not answer the questionnaire and 6 participants did not use the app. In the treatment group (n=36), significant improvement was found in 2 domains: ?Role functioning? (baseline median 33.33, IQR 16.67-83.33 vs 6 weeks median 66.67, IQR 33.33-83.33; P=.04) and ?Pain? (baseline median 33.33, IQR 16.67-50.00 vs 6 weeks median 16.67, IQR 0.00-33.33; P=.04). The ?Global health/Overall QoL? scale remained stable (baseline median 58.33, IQR 45.83-77.08 vs 6 weeks median 62.50, IQR 41.67-75.00; P=.25). In the follow-up group (n=35), significant improvement was found in 3 domains: ?Physical functioning? (baseline median 79.23, IQR 73.33-93.33 vs 6 weeks median 82.86, IQR 73.33-100.00; P=.03), ?Cognitive functioning? (baseline median 62.38, IQR 50.00-83.33 vs 6 weeks median 69.52, IQR 50.00-100.00; P=.02), and ?Social functioning? (baseline median 76.19, IQR 50.00-100.00 vs 6 weeks median 85.71, IQR 83.33-100.00; P=.05), as well as in the ?Global health/Overall QoL? scale (baseline median 57.14, IQR 83.33-100.00 vs 6 weeks median 75.0, IQR 62.91-85.73; P<.001). Conclusions: In this study, we found an improvement in specific QoL scales for both participants in treatment and follow-up when using the app for 6 weeks. The global health or overall QoL score improved significantly in the follow-up group. In the treatment group, it remained stable. International Registered Report Identifier (IRRID): RR2-10.2196/10098 UR - https://cancer.jmir.org/2023/1/e49735 UR - http://dx.doi.org/10.2196/49735 UR - http://www.ncbi.nlm.nih.gov/pubmed/38048144 ID - info:doi/10.2196/49735 ER - TY - JOUR AU - Lai, Jin-Shei AU - Jensen, E. Sally AU - Peipert, Devin John AU - Mitchell, A. Sandra AU - Garcia, F. Sofia AU - Cella, David AU - Goldman, Stewart AU - Lenzen, Alicia PY - 2023/9/8 TI - Using IT to Improve Outcomes for Children Living With Cancer (SyMon-SAYS): Protocol for a Single-Institution Waitlist Randomized Controlled Trial JO - JMIR Res Protoc SP - e50993 VL - 12 KW - pediatric, cancer KW - symptom monitoring KW - randomized controlled trial KW - protocol, electronic health record KW - health-related quality of life N2 - Background: Children and adolescents with cancer may experience multiple disease- and treatment-related symptoms that negatively affect health-related quality of life. Routine symptom surveillance thus constitutes an important component of supportive care in pediatric oncology. The Symptom Monitoring and Systematic Assessment and Reporting System in Young Survivors (SyMon-SAYS) system will administer, score, interpret, and display the results of symptom assessments captured weekly using patient-reported outcomes presented via the electronic health record (EHR) portal between clinic visits in oncology ambulatory settings, when patients are likely to be more symptomatic. This study is testing a digital system for routine symptom surveillance that includes EHR-based reports to clinicians and alerts for severe symptoms. Objective: In this randomized trial, we are examining the effects of the SyMon-SAYS system on perceived barriers to symptom management, self-efficacy, and symptom severity. Better self-management and timely clinical intervention to address symptoms promote adherence to treatment plans, strengthen child and parent self-efficacy, improve interactions between children, parents, and their clinical providers, and optimize clinical outcomes. Methods: The SyMon-SAYS system is integrated into the EHR to streamline the presentation of symptom scores and delivery of alerts for severe symptoms to clinicians using EHR (Epic) messaging functionalities. Children (aged 8 to 17 years) complete the weekly symptom assessment and review the symptom report by logging into the patient portal (Epic MyChart). This single-institution waitlist randomized controlled trial is recruiting 200 children (aged 8-17 years) with cancer and their parents, guardians, or caregivers. Participating dyads are randomly assigned to receive the intervention over 16 weeks (Group A: 16-week SyMon-SAYS intervention; Group B: 8-week usual care and then an 8-week SyMon-SAYS intervention). Analyses will (1) evaluate the efficacy of SyMon-SAYS at week 8 and the maintenance of those effects at week 16; (2) evaluate factors associated with those efficacy outcomes, including contextual factors, adherence to the SyMon-SAYS intervention, demographic characteristics, and clinical factors; and (3) evaluate predictors of adherence to the SyMon-SAYS intervention and preference of SyMon-SAYS versus usual care. Results: Data collection is currently in progress. We hypothesize that at 8 weeks, those receiving the SyMon-SAYS intervention will report decreased parent-perceived barriers to managing their children?s symptoms, increased parent and child self-efficacy, decreased child symptom burden, and ultimately better child health-related quality of life, compared to waitlist controls. Feasibility, acceptability, and engagement from the perspectives of the children with cancer, their parents, and their clinicians will be examined using mixed methods. Conclusions: We anticipate that this system will facilitate prompt identification of problematic symptoms. Additionally, we hypothesize that with the availability of graphical symptom reports over time, and timely provider responses, children or parents will become better informed and take an active role in managing their symptoms, which will further improve clinical outcomes. Trial Registration: ClinicalTrials.gov NCT04789720; https://clinicaltrials.gov/study/NCT04789720 International Registered Report Identifier (IRRID): DERR1-10.2196/50993 UR - https://www.researchprotocols.org/2023/1/e50993 UR - http://dx.doi.org/10.2196/50993 UR - http://www.ncbi.nlm.nih.gov/pubmed/37682593 ID - info:doi/10.2196/50993 ER - TY - JOUR AU - Wang, Jiamin AU - Zhen, Xuemei AU - Coyte, C. Peter AU - Shao, Di AU - Zhao, Ni AU - Chang, Lele AU - Feng, Yujia AU - Sun, Xiaojie PY - 2023/8/16 TI - Association Between Online Health Information?Seeking Behaviors by Caregivers and Delays in Pediatric Cancer: Mixed Methods Study in China JO - J Med Internet Res SP - e46953 VL - 25 KW - online health information?seeking behaviors KW - patient delay KW - diagnostic delay KW - treatment delay KW - mixed methods study N2 - Background: Pediatric cancer patients in China often present at an advanced stage of disease resulting in lower survival and poorer health outcomes. One factor hypothesized to contribute to delays in pediatric cancer has been the online health information?seeking (OHIS) behaviors by caregivers. Objective: This study aims to examine the association between OHIS behaviors by caregivers and delays for Chinese pediatric cancer patients using a mixed methods approach. Methods: This study used a mixed methods approach, specifically a sequential explanatory design. OHIS behavior by the caregiver was defined as the way caregivers access information relevant to their children?s health via the Internet. Delays in pediatric cancer were defined as any one of the following 3 types of delay: patient delay, diagnosis delay, or treatment delay. The quantitative analysis methods included descriptive analyses, Student t tests, Pearson chi-square test, and binary logistic regression analysis, all performed using Stata. The qualitative analysis methods included conceptual content analysis and the Colaizzi method. Results: A total of 303 pediatric cancer patient-caregiver dyads was included in the quantitative survey, and 29 caregivers completed the qualitative interview. Quantitative analysis results revealed that nearly one-half (151/303, 49.8%) of patients experienced delays in pediatric cancer, and the primary type of delay was diagnosis delay (113/303, 37.3%), followed by patient delay (50/303, 16.5%) and treatment delay (24/303, 7.9%). In this study, 232 of the 303 (76.6%) caregiver participants demonstrated OHIS behaviors. When those engaged in OHIS behaviors were compared with their counterparts, the likelihood of patient delay more than doubled (odds ratio=2.21; 95% CI 1.03-4.75). Qualitative analysis results showed that caregivers? OHIS behaviors impacted the cancer care pathway by influencing caregivers? symptom appraisal before the first medical contact and caregivers? acceptance of health care providers? diagnostic and treatment decisions. Conclusions: Our ?ndings suggest that OHIS among Chinese pediatric caregivers may be a risk factor for increasing the likelihood of patient delay. Our government and society should make a concerted effort to regulate online health information and improve its quality. Specialized freemium consultations provided by health care providers via online health informatic platforms are needed to shorten the time for caregivers? cancer symptom appraisal before the first medical contact. UR - https://www.jmir.org/2023/1/e46953 UR - http://dx.doi.org/10.2196/46953 UR - http://www.ncbi.nlm.nih.gov/pubmed/37585244 ID - info:doi/10.2196/46953 ER - TY - JOUR AU - Chiwanga, S. Faraja AU - Woodford, Joanne AU - Masika, M. Golden AU - Richards, A. David AU - Savi, Victor AU - von Essen, Louise PY - 2023/8/2 TI - An mHealth Intervention to Improve Guardians? Adherence to Children?s Follow-Up Care for Acute Lymphoblastic Leukemia in Tanzania (GuardiansCan Project): Protocol for a Development and Feasibility Study JO - JMIR Res Protoc SP - e48799 VL - 12 KW - childhood cancer KW - eHealth KW - feasibility KW - guardians KW - intervention development KW - low- and middle-income countries KW - Tanzania KW - mHealth KW - mobile health KW - public contribution KW - public involvement KW - mHealth intervention KW - leukemia KW - psychological distress N2 - Background: Cancer is a leading cause of death during childhood and in low- and middle-income countries survival rates can be as low as 20%. A leading reason for low childhood cancer survival rates in low- and middle-income countries such as Tanzania is treatment abandonment. Contributing factors include poor communication between health care providers and children?s guardians, insufficient cancer knowledge, and psychological distress. Objective: Our aim is to respond to Tanzanian guardians? poor adherence to children?s follow-up care after treatment for acute lymphoblastic leukemia with the help of mobile health (mHealth) technology. Our goal is to increase guardians? adherence to children?s medications and follow-up visits and to decrease their psychological distress. Methods: Following the Medical Research Council framework for developing and evaluating complex interventions, we will undertake the GuardiansCan project in an iterative phased approach to develop an mHealth intervention for subsequent testing. Public contribution activities will be implemented throughout via the establishment of a Guardians Advisory Board consisting of guardians of children with acute lymphoblastic leukemia. We will examine the acceptability, feasibility, and perceived impact of Guardians Advisory Board activities via an impact log and semistructured interviews (study I). In phase 1 (intervention development) we will explore guardians? needs and preferences for the provision of follow-up care reminders, information, and emotional support using focus group discussions and photovoice (study II). We will then co-design the mHealth intervention with guardians, health care professionals, and technology experts using participatory action research (study III). In phase 2 (feasibility), we will examine clinical, methodological, and procedural uncertainties associated with the intervention and study procedures to prepare for the design and conduct of a future definitive randomized controlled trial using a single-arm pre-post mixed methods feasibility study (study IV). Results: Data collection for the GuardiansCan project is anticipated to take 3 years. We plan to commence study I by recruiting Guardians Advisory Board members in the autumn of 2023. Conclusions: By systematically following the intervention development and feasibility phases of the Medical Research Council Framework, and working alongside an advisory board of guardians, we intend to develop an acceptable, culturally appropriate, feasible, and relevant mHealth intervention with the potential to increase guardians? adherence to children?s follow-up care after treatment of acute lymphoblastic leukemia, leading to a positive impact on children?s health and chances to survive, and reducing distress for guardians. International Registered Report Identifier (IRRID): PRR1-10.2196/48799 UR - https://www.researchprotocols.org/2023/1/e48799 UR - http://dx.doi.org/10.2196/48799 UR - http://www.ncbi.nlm.nih.gov/pubmed/37403706 ID - info:doi/10.2196/48799 ER - TY - JOUR AU - Canter, S. Kimberly AU - Ritterband, Lee AU - Freyer, R. David AU - Askins, A. Martha AU - Bava, Laura AU - Loucas, Caitlyn AU - Arasteh, Kamyar AU - You, Wen AU - Kazak, E. Anne PY - 2023/6/2 TI - The Electronic Surviving Cancer Competently Intervention Program?a Psychosocial Digital Health Intervention for English- and Spanish-Speaking Parents of Children With Cancer: Protocol for Randomized Controlled Trial JO - JMIR Res Protoc SP - e46339 VL - 12 KW - pediatric cancer KW - digital health KW - parents KW - caregivers KW - psychosocial intervention KW - family systems KW - cultural and linguistic adaptation N2 - Background: The psychosocial needs and risks of children with cancer and their families are well-documented including increased risk of parental distress, posttraumatic stress, and anxiety. There is a critical need to provide evidence-based psychosocial care to parents and caregivers of children with cancer. Digital health interventions are important to address many barriers to in-person intervention delivery but are not widely used in pediatric psychosocial cancer care. The COVID-19 pandemic has reinforced the need for flexible, acceptable, and accessible psychosocial digital health interventions. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is an innovative digital health intervention for parents and caregivers of children with cancer, delivered through a combination of self-guided web-based content and supplemented by 3 telehealth follow-up sessions with a trained telehealth guide. A Spanish language adaptation of eSCCIP, El Programa Electronico de Intervencion para Superar Cancer Competentemente (eSCCIP-SP), has been developed. The self-guided web-based cores of eSCCIP/eSCCIP-SP are a mix of didactic video content, multifamily video discussion groups featuring parents of children with cancer, and hands-on web-based activities. Objective: The objective of this study is to test eSCCIP/eSCCIP-SP in a multisite randomized controlled trial, compared to an internet-based education control condition consisting of information specifically focused on concerns relevant to parents and caregivers of children with cancer. Methods: Using a randomized controlled clinical trial design, 350 eligible parents and caregivers of children with cancer will be randomly assigned to the intervention (eSCCIP/eSCCIP-SP) or an education control condition. Data will be collected at 3 time points: preintervention (prior to randomization), immediately post intervention (after 6 weeks), and at a 3-month follow-up (from baseline). Participants randomized to either condition will receive study material (eSCCIP/eSCCIP-SP intervention or education control website) in English or Spanish, based on the primary language spoken in the home and participant preference. Results: The primary study end point is a reduction in acute distress from baseline to postintervention, with secondary end points focused on reductions in symptoms of posttraumatic stress and anxiety, and improvements in coping self-efficacy and cognitive coping. An additional exploratory aim will be focused on implementation strategies and potential costs and cost-savings of eSCCIP/eSCCIP-SP, laying the groundwork for future trials focused on dissemination and implementation, stepped-care models, and intervention refinement. Conclusions: This trial will provide necessary data to evaluate the efficacy of eSCCIP/eSCCIP-SP. This intervention has the potential to be an easily scalable and highly impactful psychosocial treatment option for parents and caregivers of children with cancer. Trial Registration: ClinicalTrials.gov NCT05294302; https://clinicaltrials.gov/ct2/show/NCT05294302 International Registered Report Identifier (IRRID): PRR1-10.2196/46339 UR - https://www.researchprotocols.org/2023/1/e46339 UR - http://dx.doi.org/10.2196/46339 UR - http://www.ncbi.nlm.nih.gov/pubmed/37267038 ID - info:doi/10.2196/46339 ER - TY - JOUR AU - Mehdizadeh, Hamed AU - Asadi, Farkhondeh AU - Nazemi, Eslam AU - Mehrvar, Azim AU - Yazdanian, Azade AU - Emami, Hassan PY - 2023/3/30 TI - A Mobile Self-Management App (CanSelfMan) for Children With Cancer and Their Caregivers: Usability and Compatibility Study JO - JMIR Pediatr Parent SP - e43867 VL - 6 KW - Digital health KW - eHealth KW - Telehealth KW - mHealth KW - Mobile app KW - self-management KW - cancer KW - child KW - parent KW - caregiver KW - usability evaluation N2 - Background: Despite the increasing development of different smartphone apps in the health care domain, most of these apps lack proper evaluation. In fact, with the rapid development of smartphones and wireless communication infrastructure, many health care systems around the world are using these apps to provide health services for people without sufficient scientific efforts to design, develop, and evaluate them. Objective: The objective of this study was to evaluate the usability of CanSelfMan, a self-management app that provides access to reliable information to improve communication between health care providers and children with cancer and their parents/caregivers, facilitating remote monitoring and promoting medication adherence. Methods: We performed debugging and compatibility tests in a simulated environment to identify possible errors. Then, at the end of the 3-week period of using the app, children with cancer and their parents/caregivers filled out the User Experience Questionnaire (UEQ) to evaluate the usability of the CanSelfMan app and their level of user satisfaction. Results: During the 3 weeks of CanSelfMan use, 270 cases of symptom evaluation and 194 questions were recorded in the system by children and their parents/caregivers and answered by oncologists. After the end of the 3 weeks, 44 users completed the standard UEQ user experience questionnaire. According to the children?s evaluations, attractiveness (mean 1.956, SD 0.547) and efficiency (mean 1.934, SD 0.499) achieved the best mean results compared with novelty (mean 1.711, SD 0.481). Parents/caregivers rated efficiency at a mean of 1.880 (SD 0.316) and attractiveness at a mean of 1.853 (SD 0.331). The lowest mean score was reported for novelty (mean 1.670, SD 0.225). Conclusions: In this study, we describe the evaluation process of a self-management system to support children with cancer and their families. Based on the feedback and scores obtained from the usability evaluation, it seems that the children and their parents find CanSelfMan to be an interesting and practical idea to provide reliable and updated information on cancer and help them manage the complications of this disease. UR - https://pediatrics.jmir.org/2023/1/e43867 UR - http://dx.doi.org/10.2196/43867 UR - http://www.ncbi.nlm.nih.gov/pubmed/36995746 ID - info:doi/10.2196/43867 ER - TY - JOUR AU - McCann, Lisa AU - Hewitt, Christopher AU - McMillan, A. Kathryn PY - 2023/3/30 TI - Developing an e-Prehabilitation System of Care for Young Adults Diagnosed With Cancer: User-Centered Design Study JO - JMIR Cancer SP - e41441 VL - 9 KW - digital health KW - human factors KW - user-centered KW - prehabilitation KW - young adults KW - cancer N2 - Background: A diagnosis of cancer in adolescence or young adulthood can pose many different and unique challenges for individuals, as well as their families and friends. Drawing on the concept of prehabilitation, the provision of high-quality, accessible, timely, reliable, and appropriate information, care, and support for young adults with cancer and their families is critical to ensure that they feel equipped and empowered to make informed decisions relating to their treatment and care. Increasingly, digital health interventions offer opportunities to augment current health care information and support provision. Co-designing these digital health interventions can help to ensure that they are meaningful and relevant to the patient cohort, thereby maximizing their accessibility and acceptability. Objective: This study had 4 primary interlinked objectives: understand the support needs of young adults with cancer at the time of diagnosis, understand the potential role of a digital health solution to assist in the delivery of prehabilitation for young adults with cancer, identify appropriate technologies and technological platforms for a digital prehabilitation system of care, and develop a prototype for a digital prehabilitation system of care. Methods: This was a qualitative study using interviews and surveys. Young adults aged 16 to 26 years diagnosed with cancer within the last 3 years were invited to participate in individual user-requirement interviews or surveys. Health care professionals specializing in the treatment and care of young adults with cancer and digital health professionals working in the industry were also interviewed or completed a survey. Consensus feedback interviews were conducted with 3 young adults and 2 health care professionals after the development of the first generation of the prototype app. Results: In total, 7 individual interviews and 8 surveys were completed with young adults with a range of cancer diagnoses. Moreover, 6 individual interviews and 9 surveys were completed with health care professionals, and 3 digital health professionals participated in one-on-one interviews. A prototype app with the working name of Cancer Helpmate was developed based on these collective participant data. Overall, feedback from participants across the data collection activities suggests that the concept for the app was positive during these developmental stages. Further insightful ideas for the app?s future development were also identified. Conclusions: Young adults with cancer and health care professionals are responsive to the need for more digitally driven services to be developed. Further development of an app such as Cancer Helpmate, which incorporates key features and functionalities directly informed by users, could help to augment the support provided to young adults with cancer. UR - https://cancer.jmir.org/2023/1/e41441 UR - http://dx.doi.org/10.2196/41441 UR - http://www.ncbi.nlm.nih.gov/pubmed/36995740 ID - info:doi/10.2196/41441 ER - TY - JOUR AU - Kim, Hyery AU - Kim, Reong Hae AU - Kang, Han Sung AU - Koh, Kyung-Nam AU - Im, Joon Ho AU - Park, Rang Yu PY - 2023/3/24 TI - Comorbidity Differences by Trajectory Groups as a Reference for Identifying Patients at Risk for Late Mortality in Childhood Cancer Survivors: Longitudinal National Cohort Study JO - JMIR Public Health Surveill SP - e41203 VL - 9 KW - cancer survivor KW - childhood cancer KW - mortality KW - morbidity KW - survival KW - cancer KW - children KW - pediatrics N2 - Background: Childhood cancer has a high long-term morbidity and mortality rate. Five years after the initial cancer diagnosis, approximately two-thirds of childhood cancer survivors experience at least one late complication, with one-quarter experiencing severe, life-threatening complications. Chronic health conditions can impact survivors? life planning and daily activities, reducing their health-related quality of life. Comprehensive and longitudinal data are required for investigations of national claims data. Objective: This study aimed to address clinical and health policy interventions and improved survival rates. A comprehensive categorization of the long-term morbidities associated with childhood cancer survivorship is required. We analyzed the trajectory groups associated with long-term mortality among childhood cancer survivors. Methods: We collected data from a nationwide claims database of the entire Korean population. Between 2003 and 2007, patients diagnosed with and treated for cancer before the age of 20 years were included. With 8119 patients who survived >10 years, 3 trajectory groups were classified according to yearly changes in the number of diagnoses (the lowest in group 1 and the highest in group 3). Results: The patterns of most comorbidities and survival rates differed significantly between the trajectory groups. Group 3 had a higher rate of mental and behavioral disorders, neoplasms, and blood organ diseases than the other two groups. Furthermore, there was a difference in the number of diagnoses by trajectory groups over the entire decade, and the disparity increased as the survival period increased. If a patient received more than four diagnoses, especially after the fourth year, the patient was likely to be assigned to group 3, which had the worst prognosis. Group 1 had the highest overall survival rate, and group 3 had the lowest (P<.001). Group 3 had the highest hazard ratio of 4.37 (95% CI 2.57-7.42; P<.001) in a multivariate analysis of late mortality. Conclusions: Our findings show that the pattern of comorbidities differed significantly among trajectory groups for late death, which could help physicians identify childhood cancer survivors at risk for late mortality. Patients with neoplasms, blood organ diseases, or mental and behavioral disorders should be identified as having an increased risk of late mortality. Furthermore, vigilance and prompt action are essential to mitigate the potential consequences of a child cancer survivor receiving four or more diagnoses within a year. UR - https://publichealth.jmir.org/2023/1/e41203 UR - http://dx.doi.org/10.2196/41203 UR - http://www.ncbi.nlm.nih.gov/pubmed/36754630 ID - info:doi/10.2196/41203 ER - TY - JOUR AU - Miser, S. James AU - Shia, Ben-Chang AU - Kao, Yi-Wei AU - Liu, Yen-Lin AU - Chen, Shih-Yen AU - Ho, Wan-Ling PY - 2023/3/2 TI - The Health Care Utilization and Medical Costs in Long-Term Follow-Up of Children Diagnosed With Leukemia, Solid Tumor, or Brain Tumor: Population-Based Study Using the National Health Insurance Claims Data JO - JMIR Public Health Surveill SP - e42350 VL - 9 KW - brain tumor KW - cancer survivor KW - children KW - cost of care KW - health care KW - health resource KW - leukemia KW - long-term follow-up KW - population-based study KW - solid tumor N2 - Background: Childhood cancer survivors are at a high risk of medical consequences of their disease and treatment. There is growing information about the long-term health issues of childhood cancer survivors; however, there are very few studies describing the health care utilization and costs for this unique population. Understanding their utilization of health care services and costs will provide the basis for developing strategies to better serve these individuals and potentially reduce the cost. Objective: This study aims to determine the utilization of health services and costs for long-term survivors of childhood cancer in Taiwan. Methods: This is a nationwide, population-based, retrospective case-control study. We analyzed the claims data of the National Health Insurance that covers 99% of the Taiwanese population of 25.68 million. A total of 33,105 children had survived for at least 5 years after the first appearance of a diagnostic code of cancer or a benign brain tumor before the age of 18 years from 2000 to 2010 with follow-up to 2015. An age- and gender-matched control group of 64,754 individuals with no cancer was randomly selected for comparison. Utilization was compared between the cancer and no cancer groups by ?2 test. The annual medical expense was compared by the Mann-Whitney U test and Kruskal-Wallis rank-sum test. Results: At a median follow-up of 7 years, childhood cancer survivors utilized a significantly higher proportion of medical center, regional hospital, inpatient, and emergency services in contrast to no cancer individuals: 57.92% (19,174/33,105) versus 44.51% (28,825/64,754), 90.66% (30,014/33,105) versus 85.70% (55,493/64,754), 27.19% (9000/33,105) versus 20.31% (13,152/64,754), and 65.26% (21,604/33,105) versus 59.36% (38,441/64,754), respectively (all P<.001). The annual total expense (median, interquartile range) of childhood cancer survivors was significantly higher than that of the comparison group (US $285.56, US $161.78-US $535.80 per year vs US $203.90, US $118.98-US $347.55 per year; P<.001). Survivors with female gender, diagnosis before the age of 3 years, and diagnosis of brain cancer or a benign brain tumor had significantly higher annual outpatient expenses (all P<.001). Moreover, the analysis of outpatient medication costs showed that hormonal and neurological medications comprised the 2 largest costs in brain cancer and benign brain tumor survivors. Conclusions: Survivors of childhood cancer and a benign brain tumor had higher utilization of advanced health resources and higher costs of care. The design of the initial treatment plan minimizing long-term consequences, early intervention strategies, and survivorship programs have the potential to mitigate costs of late effects due to childhood cancer and its treatment. UR - https://publichealth.jmir.org/2023/1/e42350 UR - http://dx.doi.org/10.2196/42350 UR - http://www.ncbi.nlm.nih.gov/pubmed/36862495 ID - info:doi/10.2196/42350 ER - TY - JOUR AU - Shuldiner, Jennifer AU - Shah, Nida AU - Reis, Catherine AU - Chalmers, Ian AU - Ivers, Noah AU - Nathan, Paul PY - 2022/9/13 TI - Developing a Provincial Surveillance and Support System for Childhood Cancer Survivors: Multiphase User-Centered Design Study JO - JMIR Hum Factors SP - e37606 VL - 9 IS - 3 KW - design KW - cancer screening KW - childhood cancer survivor KW - late effects KW - surveillance KW - cancer KW - cancer survivor KW - morbidity KW - mortality KW - cancer treatment KW - mammogram KW - echocardiogram N2 - Background: Survivors of childhood cancer are at lifelong risk of morbidity (such as new cancers or heart failure) and premature mortality due to their cancer treatment. These are termed late effects. Therefore, they require lifelong, risk-tailored surveillance. However, most adult survivors of childhood cancer do not complete recommended surveillance tests such as mammograms or echocardiograms. Objective: In partnership with survivors, family physicians, and health system partners, we are designing a provincial support system for high-priority tests informed by principles of implementation science, behavioral science, and design thinking. Methods: Our multiphase process was structured as follows. Step 1 consisted of a qualitative study to explore intervention components essential to accessing surveillance tests. Step 2 comprised a workshop with childhood cancer survivors, family physicians, and health system stakeholders that used the Step 1 findings and ?personas? (a series of fictional but data-informed characters) to develop and tailor the intervention for different survivor groups. Step 3 consisted of intervention prototype development, and Step 4 involved iterative user testing. Results: The qualitative study of 30 survivors and 7 family physicians found a high desire for information on surveillance for late effects. Respondents indicated that the intervention should help patients book appointments when they are due in addition to providing personalized information. Insights from the workshop included the importance of partnering with both family physicians and survivorship clinics and providing emotional support for survivors who may experience distress upon learning of their risk for late effects. In our user-testing process, prototypes went through iterations that incorporated feedback from users regarding acceptability, usability, and functionality. We sought to address the needs of survivors and physicians while balancing the capacity and infrastructure available for a lifelong intervention via our health system partners. Conclusions: In partnership with childhood cancer survivors, family physicians, and health system partners, we elucidated the barriers and enablers to accessing guideline-recommended surveillance tests and designed a multifaceted solution that will support survivors and their family physicians. The next step is to evaluate the intervention in a pragmatic randomized controlled trial. UR - https://humanfactors.jmir.org/2022/3/e37606 UR - http://dx.doi.org/10.2196/37606 UR - http://www.ncbi.nlm.nih.gov/pubmed/36099013 ID - info:doi/10.2196/37606 ER - TY - JOUR AU - Viola, S. Adrienne AU - Levonyan-Radloff, Kristine AU - Masterson, Margaret AU - Manne, L. Sharon AU - Hudson, V. Shawna AU - Devine, A. Katie PY - 2022/8/3 TI - Development of a Self-management and Peer-Mentoring Intervention to Improve Transition Readiness Among Young Adult Survivors of Pediatric Cancer: Formative Qualitative Research Study JO - JMIR Form Res SP - e36323 VL - 6 IS - 8 KW - self-management KW - peer mentoring KW - cancer survivorship KW - long-term follow-up care N2 - Background: Childhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness. Objective: This study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors. Methods: Intervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention. Results: A total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor. Conclusions: Incorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users? preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer. UR - https://formative.jmir.org/2022/8/e36323 UR - http://dx.doi.org/10.2196/36323 UR - http://www.ncbi.nlm.nih.gov/pubmed/35921137 ID - info:doi/10.2196/36323 ER - TY - JOUR AU - Papan, Cihan AU - Reifenrath, Katharina AU - Last, Katharina AU - Attarbaschi, Andishe AU - Graf, Norbert AU - Groll, H. Andreas AU - Huebner, Johannes AU - Laws, Hans-Jürgen AU - Lehrnbecher, Thomas AU - Liese, Johannes AU - Martin, Luise AU - Tenenbaum, Tobias AU - Weichert, Stefan AU - Vieth, Simon AU - von Both, Ulrich AU - Hufnagel, Markus AU - Simon, Arne PY - 2022/6/20 TI - Antimicrobial Use in Pediatric Oncology and Hematology: Protocol for a Multicenter Point-Prevalence Study With Qualitative Expert Panel Assessment JO - JMIR Res Protoc SP - e35774 VL - 11 IS - 6 KW - point-prevalence study KW - antimicrobial stewardship KW - pediatric oncology KW - pediatric hematology KW - expert panel KW - antimicrobial resistance KW - oncology KW - cancer KW - pediatrics N2 - Background: Because infections are a major driver of morbidity and mortality in children with hematologic or oncologic diseases, antimicrobials are frequently prescribed in pediatric oncology practice. However, excess or inappropriate use of antimicrobials is directly linked to the emergence of antimicrobial resistance. Although point-prevalence studies have examined the extent of antimicrobial use, a comprehensive qualitative evaluation of individual antimicrobial prescriptions remains lacking. Objective: The aim of this study is to identify appropriate versus inappropriate antimicrobial use among pediatric cancer patients in a point-prevalence study, followed by an expert panel adjudication process and a subsequent report of these findings to participating centers. This study also aims to improve the quality of patient care by informing centers about discrepancies between internal standards of care and national guidelines. Methods: Our point-prevalence study is performed at pediatric cancer centers in Germany and Austria. All patients under 18 years old who are hospitalized at the time of the study are included. As a supplement to the point-prevalence study, an expert panel is qualitatively assessing each of the antimicrobial prescriptions at the participating centers to review local guidelines and compare them with national guidelines. Results: As of December 2021, the point-prevalence survey has been conducted at 30 sites and expert panel adjudication for qualitative assessment of each antimicrobial use is ongoing. Results of the study are expected in 2022. Conclusions: This is the first point-prevalence study conducted among pediatric cancer centers with an integrated, multistep, qualitative approach that assesses each antimicrobial prescription. The results of this study will inform possible interventions for internal guidelines and antimicrobial stewardship programs implemented at pediatric cancer centers. In addition, local guidelines will be compared with national guidelines. Furthermore, this study will contribute to the overall integration of antimicrobial stewardship principles and initiatives in pediatric oncology and hematology, thereby improving safety and quality of care for children and adolescents with cancer and blood disorders. International Registered Report Identifier (IRRID): DERR1-10.2196/35774 UR - https://www.researchprotocols.org/2022/6/e35774 UR - http://dx.doi.org/10.2196/35774 UR - http://www.ncbi.nlm.nih.gov/pubmed/35723906 ID - info:doi/10.2196/35774 ER - TY - JOUR AU - Cederved, Catarina AU - Back, Jon AU - Ångström-Brännström, Charlotte AU - Ljungman, Gustaf AU - Engvall, Gunn PY - 2022/5/31 TI - Co-creation of a Serious Game About Radiotherapy: Participatory Action Research Study With Children Treated for Cancer JO - JMIR Hum Factors SP - e34476 VL - 9 IS - 2 KW - children KW - participatory action research KW - game design KW - radiotherapy KW - education KW - supportive care KW - oncology N2 - Background: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user. Objective: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy. Methods: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children?s participation changed the game. Results: Two main themes were identified. The first theme was ?The children?s participation was affected by their health and treatment? and included the following subthemes: ?an opportunity to share emotions and perceptions of radiotherapy? and ?the possibility to participate was affected by the severity of the disease.? The second theme was ?participation allowed becoming an active part of game development? and included the following subthemes: ?the opportunity to express sentiments about the game,? ?the emergence of a playable game through the children?s contributions,? and ?the necessity of understanding the text.? Conclusions: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children?s illness affected their possibility to take part; thus, it is crucial to accommodate the children?s needs when conducting similar studies. The parents? participation facilitated the meetings for their children, even though their involvement in the game design was negligible. UR - https://humanfactors.jmir.org/2022/2/e34476/ UR - http://dx.doi.org/10.2196/34476 UR - http://www.ncbi.nlm.nih.gov/pubmed/35639467 ID - info:doi/10.2196/34476 ER - TY - JOUR AU - Lie, C. Hanne AU - Anderssen, Sigmund AU - Rueegg, Silvia Corina AU - Raastad, Truls AU - Grydeland, May AU - Thorsen, Lene AU - Stensrud, Trine AU - Edvardsen, Elisabeth AU - Larsen, Hamilton Marie AU - Torsvik, Kristin Ingrid AU - Bovim, Peder Lars AU - Götte, Miriam AU - Lähteenmäki, Maria Päivi AU - Kriemler, Susi AU - Larsen, Bækgaard Hanne AU - Fridh, Kaj Martin AU - Ørstavik, Kristin AU - Brun, Henrik AU - Matthews, Iren AU - Hornset, Else AU - Ruud, Ellen PY - 2022/3/8 TI - The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study JO - JMIR Res Protoc SP - e35838 VL - 11 IS - 3 KW - childhood cancer survivor KW - physical activity KW - physical fitness KW - barriers KW - intervention KW - quality of life KW - fatigue N2 - Background: Survivors of childhood cancer represent a growing population with a long life expectancy but high risks of treatment-induced morbidity and premature mortality. Regular physical activity (PA) may improve their long-term health; however, high-quality empirical knowledge is sparse. Objective: The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) study comprises 4 work packages (WPs) aiming for the objective determination of PA and self-reported health behavior, fatigue, and quality of life (WP 1); physical fitness determination (WP 2); the evaluation of barriers to and facilitators of PA (WP 1 and 3); and the feasibility testing of an intervention to increase PA and physical fitness (WP 4). Methods: The PACCS study will use a mixed methods design, combining patient-reported outcome measures and objective clinical and physiological assessments with qualitative data gathering methods. A total of 500 survivors of childhood cancer aged 9 to 18 years with ?1 year after treatment completion will be recruited in follow-up care clinics in Norway, Denmark, Finland, Germany, and Switzerland. All participants will participate in WP 1, of which approximately 150, 40, and 30 will be recruited to WP 2, WP3, and WP 4, respectively. The reference material for WP 1 is available from existing studies, whereas WP 2 will recruit healthy controls. PA levels will be measured using ActiGraph accelerometers and self-reports. Validated questionnaires will be used to assess health behaviors, fatigue, and quality of life. Physical fitness will be measured by a cardiopulmonary exercise test, isometric muscle strength tests, and muscle power and endurance tests. Limiting factors will be identified via neurological, pulmonary, and cardiac evaluations and the assessment of body composition and muscle size. Semistructured, qualitative interviews, analyzed using systematic text condensation, will identify the perceived barriers to and facilitators of PA for survivors of childhood cancer. In WP 4, we will evaluate the feasibility of a 6-month personalized PA intervention with the involvement of local structures. Results: Ethical approvals have been secured at all participating sites (Norwegian Regional Committee for Medical Research Ethics [2016/953 and 2018/739]; the Oslo University Hospital Data Protection Officer; equivalent institutions in Finland, Denmark [file H-19032270], Germany, and Switzerland [Ethics Committee of Northwestern and Central Switzerland, project ID: 2019-00410]). Data collection for WP 1 to 3 is complete. This will be completed by July 2022 for WP 4. Several publications are already in preparation, and 2 have been published. Conclusions: The PACCS study will generate high-quality knowledge that will contribute to the development of an evidence-based PA intervention for young survivors of childhood cancer to improve their long-term care and health. We will identify physiological, psychological, and social barriers to PA that can be targeted in interventions with immediate benefits for young survivors of childhood cancer in need of rehabilitation. International Registered Report Identifier (IRRID): DERR1-10.2196/35838 UR - https://www.researchprotocols.org/2022/3/e35838 UR - http://dx.doi.org/10.2196/35838 UR - http://www.ncbi.nlm.nih.gov/pubmed/35258456 ID - info:doi/10.2196/35838 ER - TY - JOUR AU - Zolk, Oliver AU - von dem Knesebeck, Annika AU - Graf, Norbert AU - Simon, Thorsten AU - Hero, Barbara AU - Abdul-Khaliq, Hashim AU - Abd El Rahman, Mohamed AU - Spix, Claudia AU - Mayer, Benjamin AU - Elsner, Susanne AU - Gebauer, Judith AU - Langer, Thorsten PY - 2022/2/17 TI - Cardiovascular Health Status And Genetic Risk In Survivors of Childhood Neuroblastoma and Nephroblastoma Treated With Doxorubicin: Protocol of the Pharmacogenetic Part of the LESS-Anthra Cross-Sectional Cohort Study JO - JMIR Res Protoc SP - e27898 VL - 11 IS - 2 KW - cardiotoxicity KW - anthracyclines KW - childhood cancer survivors KW - genetics KW - polymorphisms KW - cardiology KW - cardiac health KW - cancer KW - survivors KW - childhood KW - children KW - risk monitoring KW - cardiovascular health KW - pediatrics N2 - Background: In childhood cancer survivors (survival of 5 years or more after diagnosis), cardiac toxicity is the most common nonmalignant cause of death attributed to treatment-related consequences. Identifying patients at risk of developing late cardiac toxicity is therefore crucial to improving treatment outcomes. The use of genetic markers has been proposed, together with clinical risk factors, to predict individual risk of cardiac toxicity from cancer therapies, such as doxorubicin. Objective: The primary aim of this study is to evaluate the value of multimarker genetic testing for RARG rs2229774, UGT1A6 rs17863783, and SLC28A3 rs7853758 for predicting doxorubicin-induced cardiotoxicity. The secondary aim is to replicate previously described associations of candidate genetic markers with doxorubicin-induced cardiotoxicity. Moreover, we will evaluate the prevalence of cardiovascular dysfunction in childhood cancer survivors after neuroblastoma or nephroblastoma. Methods: This is the pharmacogenetic substudy of the research project Structural Optimization for Children With Cancer After Anthracycline Therapy (LESS-Anthra). We invited 2158 survivors of childhood neuroblastoma or nephroblastoma treated with doxorubicin according to the trial protocols of SIOP 9/GPOH, SIOP 93-01/GPOH, SIOP 2001/GPOH, NB 90, NB 97, or NB 2004 to participate in this prospective cross-sectional cohort study. The study participants underwent a cardiological examination and were asked to provide a blood or saliva sample for genotyping. The study participants' health statuses and cardiovascular diagnoses were recorded using a questionnaire completed by the cardiologist. Digital echocardiographic data were centrally evaluated to determine the contractile function parameters. Medical data on the tumor diagnosis and treatment protocol were taken from the study documentation. Survivors were screened for variants of several candidate genes by TaqMan genotyping. Results: This study includes 657 survivors treated with doxorubicin for childhood cancer, the largest German cohort assembled to date to investigate cardiovascular late effects. Data analyses are yet to be completed. Conclusions: This study will define the genetic risk related to 3 marker genes proposed in a pharmacogenetic guideline for risk assessment. Moreover, the results of this study will show the prevalence of cardiovascular dysfunction in survivors of pediatric neuroblastoma or nephroblastoma who were treated with doxorubicin. The results will help to improve primary treatment and follow-up care, thus reducing cardiovascular late effects in the growing population of childhood cancer survivors. Trial Registration: German Clinical Trials Register DRKS00015084; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00015084 International Registered Report Identifier (IRRID): DERR1-10.2196/27898 UR - https://www.researchprotocols.org/2022/2/e27898 UR - http://dx.doi.org/10.2196/27898 UR - http://www.ncbi.nlm.nih.gov/pubmed/35175211 ID - info:doi/10.2196/27898 ER - TY - JOUR AU - Kim, Hyun-Yong AU - Kang, Kyung-Ah AU - Han, Suk-Jung AU - Chun, Jiyoung PY - 2022/2/1 TI - Web-Based Research Trends on Child and Adolescent Cancer Survivors Over the Last 5 Years: Text Network Analysis and Topic Modeling Study JO - J Med Internet Res SP - e32309 VL - 24 IS - 2 KW - text network analysis KW - topic modeling KW - cancer survivors KW - child KW - adolescent KW - research trends KW - knowledge structures N2 - Background: Being diagnosed with cancer during childhood or adolescence can disrupt important periods in an individual?s physical, psychosocial, and spiritual development and potentially reduce the quality of life (QOL) after treatment. Research is urgently required to improve the QOL for child and adolescent cancer survivors, and it is necessary to analyze the trends in prior research reported in international academic journals to identify knowledge structures. Objective: This study aims to identify the main keywords based on network centrality, subgroups (clusters) of keyword networks by using a cohesion analysis method, and the main theme of child and adolescent cancer survivor?related research abstracts through topic modeling. This study also aims to label the subgroups by comparing the results of the cohesion and topic modeling. Methods: A text network analysis method and topic modeling were used to explore the main trends in child and adolescent cancer survivor research by structuring a network of keyword (semantic morphemes) co-occurrence in the abstracts of articles published in 5 major web-based databases from 2016 to 2020. A total of 1677 child and adolescent cancer survivor?related studies were used for data analyses. Data selection, processing, and analyses were also conducted. Results: The top 5 keywords in terms of degree and eigenvector centrality were risk, control interval, radiation, childhood cancer treatment, and diagnosis. Of the 1677 studies used for data analyses, cluster 1 included 780 (46.51%) documents under risk management, cluster 2 contained 557 (33.21%) articles under health-related QOL and supportive care, and cluster 3 consisted of 340 (20.27%) studies under cancer treatment and complications. Conclusions: This study is significant in that it confirms the knowledge structure based on the main keywords and cross-disciplinary trends in child and adolescent cancer survivor research published in the last 5 years worldwide. The primary goal of child and adolescent cancer survivor research is to prevent and manage the various aspects of the problems encountered during the transition to a normal life and to improve the overall QOL. To this end, it is necessary to further revitalize the study of the multidisciplinary team approach for the promotion of age-specific health behaviors and the development of intervention strategies with increased feasibility for child and adolescent cancer survivors. UR - https://www.jmir.org/2022/2/e32309 UR - http://dx.doi.org/10.2196/32309 UR - http://www.ncbi.nlm.nih.gov/pubmed/35103615 ID - info:doi/10.2196/32309 ER - TY - JOUR AU - Mizrach, Helen AU - Goshe, Brett AU - Park, R. Elyse AU - Recklitis, Christopher AU - Greer, A. Joseph AU - Chang, Yuchiao AU - Frederick, Natasha AU - Abrams, Annah AU - Tower, D. Mary AU - Walsh, A. Emily AU - Huang, Mary AU - Kenney, Lisa AU - Homans, Alan AU - Miller, Karen AU - Denninger, John AU - Usmani, Naheed Ghazala AU - Peppercorn, Jeffrey AU - Perez, K. Giselle PY - 2022/1/26 TI - Randomized Waitlist-Control Trial of a Web-Based Stress-Management and Resiliency Program for Adolescent and Young Adult Cancer Survivors: Protocol for the Bounce Back Study JO - JMIR Res Protoc SP - e34033 VL - 11 IS - 1 KW - cancer survivorship KW - adolescent and young adult (AYA) KW - resiliency KW - stress management KW - coping N2 - Background: The emotional health of adolescent and young adult (AYA) cancer survivors is compromised both during and after cancer treatment. Targeted programs designed to support AYAs? ability to cope with stress in the years following treatment completion are lacking. Mind-body programs may ameliorate the negative psychological and emotional effects of stress and assist AYAs with managing the psychosocial challenges of early survivorship. Objective: Our randomized waitlist-control trial aims to assess the feasibility, acceptability, and preliminary efficacy of a virtual group program (Bounce Back) to promote stress management and resiliency among posttreatment AYAs. Methods: Bounce Back is a stress management and resiliency program delivered via videoconference by a trained mental health clinician. Sessions were adapted from an evidence-based mind-body program (Stress Management and Resiliency Training - Relaxation Response Resiliency Program [SMART-3RP]) grounded in relaxation response elicitation, mindfulness, cognitive behavioral therapy, and positive psychology. Seventy-two AYAs (diagnosed with cancer between ages 14 years and 29 years and had completed cancer treatment within the last 5 years) were randomly assigned to the Bounce Back program or waitlist-control group and completed assessments at baseline, 3 months postbaseline, and 6 months postbaseline. The primary aim of the study is to determine the feasibility and acceptability of the Bounce Back program. Descriptive statistics, including means, frequencies, and ranges supplemented by qualitative exit interview feedback will be used to characterize the sample and to summarize feasibility and acceptability. The exploratory aims are to evaluate the preliminary effects of the program on stress coping and psychosocial outcome measures (ie, anxiety, depression) collected across the 3 time points. Results: This study was funded by the National Cancer Institute in July 2017. Study procedures were approved by the Dana-Farber Harvard Cancer Center Institutional Review Board in October 2018 (Protocol 18-428). The randomized trial was conducted from July 2019 to March 2021. Quantitative data collection is complete, and qualitative exit interview data collection is ongoing. Results are expected to be published in peer-reviewed journals and presented at local, national, or international meetings in the coming years. Conclusions: Few evidence-based programs exist that tackle the key transitional issues faced by AYA cancer survivors. Future analyses will help us determine the feasibility and acceptability of the Bounce Back program and its impact on AYA stress coping and psychological well-being. Trial Registration: ClinicalTrials.gov NCT03768336; https://clinicaltrials.gov/ct2/show/NCT03768336 International Registered Report Identifier (IRRID): DERR1-10.2196/34033 UR - https://www.researchprotocols.org/2022/1/e34033 UR - http://dx.doi.org/10.2196/34033 UR - http://www.ncbi.nlm.nih.gov/pubmed/35080500 ID - info:doi/10.2196/34033 ER - TY - JOUR AU - Schroeder, Kristin AU - Maiarana, James AU - Gisiri, Mwitasrobert AU - Joo, Emma AU - Muiruri, Charles AU - Zullig, Leah AU - Masalu, Nestory AU - Vasudevan, Lavanya PY - 2021/12/8 TI - Caregiver Acceptability of Mobile Phone Use for Pediatric Cancer Care in Tanzania: Cross-sectional Questionnaire Study JO - JMIR Pediatr Parent SP - e27988 VL - 4 IS - 4 KW - mHealth KW - literacy KW - smartphone use KW - developing countries KW - pediatric cancer KW - cancer KW - pediatrics KW - children KW - parents KW - caregivers KW - mobile health KW - smartphone KW - SMS KW - education KW - knowledge transfer KW - communication N2 - Background: There is a 60% survival gap between children diagnosed with cancer in low- and middle-income countries (LMICs) and those in high-income countries. Low caregiver knowledge about childhood cancer and its treatment results in presentation delays and subsequent treatment abandonment in LMICs. However, in-person education to improve caregiver knowledge can be challenging due to health worker shortages and inadequate training. Due to the rapid expansion of mobile phone use worldwide, mobile health (mHealth) technologies offer an alternative to delivering in-person education. Objective: The aim of this study is to assess patterns of mobile phone ownership and use among Tanzanian caregivers of children diagnosed with cancer as well as their acceptability of an mHealth intervention for cancer education, patient communication, and care coordination. Methods: In July 2017, caregivers of children <18 years diagnosed with cancer and receiving treatment at Bugando Medical Centre (BMC) were surveyed to determine mobile phone ownership, use patterns, technology literacy, and acceptability of mobile phone use for cancer education, patient communication, and care coordination. Descriptive statistics were generated from the survey data by using mean and SD values for continuous variables and percentages for binary or categorical variables. Results: All eligible caregivers consented to participate and completed the survey. Of the 40 caregivers who enrolled in the study, most used a mobile phone (n=34, 85%) and expressed high acceptability in using these devices to communicate with a health care provider regarding treatment support (n=39, 98%), receiving laboratory results (n=37, 93%), receiving reminders for upcoming appointments (n=38, 95%), and receiving educational information on cancer (n=35, 88%). Although only 9% (3/34) of mobile phone owners owned phones with smartphone capabilities, about 74% (25/34) self-reported they could view and read SMS text messages. Conclusions: To our knowledge, this is the first study to assess patterns of mobile phone ownership and use among caregivers of children with cancer in Tanzania. The high rate of mobile phone ownership and caregiver acceptability for a mobile phone?based education and communication strategy suggests that a mobile phone?based intervention, particularly one that utilizes SMS technology, could be feasible in this setting. UR - https://pediatrics.jmir.org/2021/4/e27988 UR - http://dx.doi.org/10.2196/27988 UR - http://www.ncbi.nlm.nih.gov/pubmed/34889763 ID - info:doi/10.2196/27988 ER - TY - JOUR AU - Marron, Manuela AU - Brackmann, Kim Lara AU - Schwarz, Heike AU - Hummel-Bartenschlager, Willempje AU - Zahnreich, Sebastian AU - Galetzka, Danuta AU - Schmitt, Iris AU - Grad, Christian AU - Drees, Philipp AU - Hopf, Johannes AU - Mirsch, Johanna AU - Scholz-Kreisel, Peter AU - Kaatsch, Peter AU - Poplawski, Alicia AU - Hess, Moritz AU - Binder, Harald AU - Hankeln, Thomas AU - Blettner, Maria AU - Schmidberger, Heinz PY - 2021/11/11 TI - Identification of Genetic Predispositions Related to Ionizing Radiation in Primary Human Skin Fibroblasts From Survivors of Childhood and Second Primary Cancer as Well as Cancer-Free Controls: Protocol for the Nested Case-Control Study KiKme JO - JMIR Res Protoc SP - e32395 VL - 10 IS - 11 KW - fibroblast KW - irradiation KW - childhood cancer KW - neoplasm KW - second primary neoplasm KW - second cancer KW - study design KW - participation KW - feasibility KW - cell line N2 - Background: Therapy for a first primary neoplasm (FPN) in childhood with high doses of ionizing radiation is an established risk factor for second primary neoplasms (SPN). An association between exposure to low doses and childhood cancer is also suggested; however, results are inconsistent. As only subgroups of children with FPNs develop SPNs, an interaction between radiation, genetic, and other risk factors is presumed to influence cancer development. Objective: Therefore, the population-based, nested case-control study KiKme aims to identify differences in genetic predisposition and radiation response between childhood cancer survivors with and without SPNs as well as cancer-free controls. Methods: We conducted a population-based, nested case-control study KiKme. Besides questionnaire information, skin biopsies and saliva samples are available. By measuring individual reactions to different exposures to radiation (eg, 0.05 and 2 Gray) in normal somatic cells of the same person, our design enables us to create several exposure scenarios for the same person simultaneously and measure several different molecular markers (eg, DNA, messenger RNA, long noncoding RNA, copy number variation). Results: Since 2013, 101 of 247 invited SPN patients, 340 of 1729 invited FPN patients, and 150 of 246 invited cancer-free controls were recruited and matched by age and sex. Childhood cancer patients were additionally matched by tumor morphology, year of diagnosis, and age at diagnosis. Participants reported on lifestyle, socioeconomical, and anthropometric factors, as well as on medical radiation history, health, and family history of diseases (n=556). Primary human fibroblasts from skin biopsies of the participants were cultivated (n=499) and cryopreserved (n=3886). DNA was extracted from fibroblasts (n=488) and saliva (n=510). Conclusions: This molecular-epidemiological study is the first to combine observational epidemiological research with standardized experimental components in primary human skin fibroblasts to identify genetic predispositions related to ionizing radiation in childhood and SPNs. In the future, fibroblasts of the participants will be used for standardized irradiation experiments, which will inform analysis of the case-control study and vice versa. Differences between participants will be identified using several molecular markers. With its innovative combination of experimental and observational components, this new study will provide valuable data to forward research on radiation-related risk factors in childhood cancer and SPNs. International Registered Report Identifier (IRRID): DERR1-10.2196/32395 UR - https://www.researchprotocols.org/2021/11/e32395 UR - http://dx.doi.org/10.2196/32395 UR - http://www.ncbi.nlm.nih.gov/pubmed/34762066 ID - info:doi/10.2196/32395 ER - TY - JOUR AU - Lu, Zhaohua AU - Sim, Jin-ah AU - Wang, X. Jade AU - Forrest, B. Christopher AU - Krull, R. Kevin AU - Srivastava, Deokumar AU - Hudson, M. Melissa AU - Robison, L. Leslie AU - Baker, N. Justin AU - Huang, I-Chan PY - 2021/11/3 TI - Natural Language Processing and Machine Learning Methods to Characterize Unstructured Patient-Reported Outcomes: Validation Study JO - J Med Internet Res SP - e26777 VL - 23 IS - 11 KW - natural language processing KW - machine learning KW - PROs KW - pediatric oncology N2 - Background: Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship. Objective: This study aims to test the validity of natural language processing (NLP) and machine learning (ML) algorithms in identifying different attributes of pain interference and fatigue symptoms experienced by child and adolescent survivors of cancer versus the judgment by PRO content experts as the gold standard to validate NLP/ML algorithms. Methods: This cross-sectional study focused on child and adolescent survivors of cancer, aged 8 to 17 years, and caregivers, from whom 391 meaning units in the pain interference domain and 423 in the fatigue domain were generated for analyses. Data were collected from the After Completion of Therapy Clinic at St. Jude Children?s Research Hospital. Experienced pain interference and fatigue symptoms were reported through in-depth interviews. After verbatim transcription, analyzable sentences (ie, meaning units) were semantically labeled by 2 content experts for each attribute (physical, cognitive, social, or unclassified). Two NLP/ML methods were used to extract and validate the semantic features: bidirectional encoder representations from transformers (BERT) and Word2vec plus one of the ML methods, the support vector machine or extreme gradient boosting. Receiver operating characteristic and precision-recall curves were used to evaluate the accuracy and validity of the NLP/ML methods. Results: Compared with Word2vec/support vector machine and Word2vec/extreme gradient boosting, BERT demonstrated higher accuracy in both symptom domains, with 0.931 (95% CI 0.905-0.957) and 0.916 (95% CI 0.887-0.941) for problems with cognitive and social attributes on pain interference, respectively, and 0.929 (95% CI 0.903-0.953) and 0.917 (95% CI 0.891-0.943) for problems with cognitive and social attributes on fatigue, respectively. In addition, BERT yielded superior areas under the receiver operating characteristic curve for cognitive attributes on pain interference and fatigue domains (0.923, 95% CI 0.879-0.997; 0.948, 95% CI 0.922-0.979) and superior areas under the precision-recall curve for cognitive attributes on pain interference and fatigue domains (0.818, 95% CI 0.735-0.917; 0.855, 95% CI 0.791-0.930). Conclusions: The BERT method performed better than the other methods. As an alternative to using standard PRO surveys, collecting unstructured PROs via interviews or conversations during clinical encounters and applying NLP/ML methods can facilitate PRO assessment in child and adolescent cancer survivors. UR - https://www.jmir.org/2021/11/e26777 UR - http://dx.doi.org/10.2196/26777 UR - http://www.ncbi.nlm.nih.gov/pubmed/34730546 ID - info:doi/10.2196/26777 ER - TY - JOUR AU - Woodford, Joanne AU - Farrand, Paul AU - Hagström, Josefin AU - Hedenmalm, Li AU - von Essen, Louise PY - 2021/7/22 TI - Internet-Administered Cognitive Behavioral Therapy for Common Mental Health Difficulties in Parents of Children Treated for Cancer: Intervention Development and Description Study JO - JMIR Form Res SP - e22709 VL - 5 IS - 7 KW - parents KW - eMental health KW - internet-administered cognitive behavioral therapy KW - ICBT KW - TIDieR KW - CBT self-help KW - low-intensity CBT KW - mobile phone N2 - Background: Following the end of a child?s treatment for cancer, parents may report psychological distress. However, there is a lack of evidence-based interventions that are tailored to the population, and psychological support needs are commonly unmet. An internet-administered low-intensity cognitive behavioral therapy (LICBT)?based intervention (EJDeR [internetbaserad självhjälp för föräldrar till barn som avslutat en behandling mot cancer]) may provide a solution. Objective: The first objective is to provide an overview of a multimethod approach that was used to inform the development of the EJDeR intervention. The second objective is to provide a detailed description of the EJDeR intervention in accordance with the Template for Intervention Description and Replication (TIDieR) checklist. Methods: EJDeR was developed through a multimethod approach, which included the use of existing evidence, the conceptualization of distress, participatory action research, a cross-sectional survey, and professional and public involvement. Depending on the main presenting difficulty identified during assessment, LICBT behavioral activation or worry management treatment protocols are adopted for the treatment of depression or generalized anxiety disorder when experienced individually or when comorbid. EJDeR is delivered via the Uppsala University Psychosocial Care Programme (U-CARE) portal, a web-based platform that is designed to deliver internet-administered LICBT interventions and includes secure videoconferencing. To guide parents in the use of EJDeR, weekly written messages via the portal are provided by e-therapists comprising final year psychology program students with training in cognitive behavioral therapy. Results: An overview of the development process and a description of EJDeR, which was informed by the TIDieR checklist, are presented. Adaptations that were made in response to public involvement are highlighted. Conclusions: EJDeR represents a novel, guided, internet-administered LICBT intervention for supporting parents of children treated for cancer. Adopting the TIDieR checklist offers the potential to enhance fidelity to the intervention protocol and facilitate later implementation. The intervention is currently being tested in a feasibility study (the ENGAGE study). International Registered Report Identifier (IRRID): RR2-10.1136/bmjopen-2018-023708 UR - https://formative.jmir.org/2021/7/e22709 UR - http://dx.doi.org/10.2196/22709 UR - http://www.ncbi.nlm.nih.gov/pubmed/34142662 ID - info:doi/10.2196/22709 ER - TY - JOUR AU - Krej?í, Denisa AU - Karolyi, Mat?j AU - Pehalová, Lucie AU - ??avnický, Jakub AU - Zapletalová, Michaela AU - Katinová, Ivana AU - ?t?rba, Jaroslav AU - Starý, Jan AU - ?najdrová, Lenka AU - Komenda, Martin AU - Du?ek, Ladislav PY - 2021/6/29 TI - Development of the Czech Childhood Cancer Information System: Data Analysis and Interactive Visualization JO - JMIR Public Health Surveill SP - e23990 VL - 7 IS - 6 KW - cancer epidemiology KW - children KW - data visualization KW - software development N2 - Background: The knowledge of cancer burden in the population, its time trends, and the possibility of international comparison is an important starting point for cancer programs. A reliable interactive tool describing cancer epidemiology in children and adolescents has been nonexistent in the Czech Republic until recently. Objective: The goal of this study is to develop a new web portal entitled the Czech Childhood Cancer Information System (CCCIS), which would provide information on childhood cancer epidemiology in the Czech Republic. Methods: Data on childhood cancers have been obtained from the Czech National Cancer Registry. These data were validated using the clinical database of childhood cancer patients and subsequently combined with data from the National Register of Hospitalised Patients and with data from death certificates. These validated data were then used to determine the incidence and survival rates of childhood cancer patients aged 0 to 19 years who were diagnosed in the period 1994 to 2016 (N=9435). Data from death certificates were used to monitor long-term mortality trends. The technical solution is based on the robust PHP development Symfony framework, with the PostgreSQL system used to accommodate the data basis. Results: The web portal has been available for anyone since November 2019, providing basic information for experts (ie, analyses and publications) on individual diagnostic groups of childhood cancers. It involves an interactive tool for analytical reporting, which provides information on the following basic topics in the form of graphs or tables: incidence, mortality, and overall survival. Feedback was obtained and the accuracy of outputs published on the CCCIS portal was verified using the following methods: the validation of the theoretical background and the user testing. Conclusions: We developed software capable of processing data from multiple sources, which is freely available to all users and makes it possible to carry out automated analyses even for users without mathematical background; a simple selection of a topic to be analyzed is required from the user. UR - https://publichealth.jmir.org/2021/6/e23990 UR - http://dx.doi.org/10.2196/23990 UR - http://www.ncbi.nlm.nih.gov/pubmed/34185010 ID - info:doi/10.2196/23990 ER - TY - JOUR AU - Lambert, Genevieve AU - Alos, Nathalie AU - Bernier, Pascal AU - Laverdière, Caroline AU - Kairy, Dahlia AU - Drummond, Kenneth AU - Dahan-Oliel, Noémi AU - Lemay, Martin AU - Veilleux, Louis-Nicolas PY - 2021/6/16 TI - Home-Based Telehealth Exercise Intervention in Early-On Survivors of Childhood Acute Lymphoblastic Leukemia: Feasibility Study JO - JMIR Cancer SP - e25569 VL - 7 IS - 2 KW - exercise therapy KW - rehabilitation KW - acute lymphoblastic leukemia KW - intervention study KW - telehealth KW - mobile phone N2 - Background: Acute lymphoblastic leukemia is the most common type of pediatric cancer. Acute lymphoblastic leukemia causes an altered bone mineral homeostasis state, which can contribute to osteopenia, and bone fractures, most commonly vertebral fractures. With the increasing number of childhood cancer survivors, late adverse effects such as musculoskeletal comorbidities are often reported and are further influenced by inactive lifestyle habits. Physical activity has been shown to increase the mechanical workload of the bone, mitigating bone impairment in other cancer-specific populations. Objective: This interventional pilot study aims to investigate the use of telehealth to deliver a home-based exercise intervention for early-on survivors of bone marrow?related hematological malignancies and to assess its impact on survivors? musculoskeletal and functional health. Methods: We aimed to recruit a group of 12 early-on survivors of acute lymphoblastic leukemia, within 6 months to 5 years of treatment, to participate in and complete the proposed telehealth intervention with a parent. The 16-week intervention included 40 potential home-based physical activity interventions supervised by a kinesiologist through a telehealth internet platform, with monthly progression. Patients were recruited to the cohort if they were able to participate in the intervention during the first month (minimum 12 weeks of intervention). Evaluation before and after the intervention protocol highlighted differences in functional capacities and musculoskeletal health of patients using mechanography, peripheral quantitative computed tomography, 6-minute walk test, and grip force test. Results: The recruitment rate for the intervention was low (12/57, 21% of contacted patients). Of 12 patients, 3 were excluded (1=relapse, 1=failure to meet technical requirements, and 1=abandoned). The 9 patients who completed the intervention (6 girls; mean age 10.93, SD 2.83 years; mean BMI 21.58, SD 6.55 kg/m2; mean time since treatment completion 36.67, SD 16.37 months) had a mean adherence of 89% and a completion rate of 75%. In addition, these patients showed functional improvements in lower limb muscle force and power as well as in the 6-minute walk test distance. Participants also showed improved bone health after the intervention on the following parameters: bone mineral content, stress-strain index, total and cortical cross-sectional area at the 14% site (P=.03, P=.01, P=.01, and P=.001, respectively) and 38% site of the tibia (P=.003, P=.04, P=.001, and P=.003, respectively). Conclusions: High adherence and participation rates suggest that telehealth is a feasible method to deliver exercise interventions to young early-on survivors of acute lymphoblastic leukemia. The proposed intervention seems promising in providing benefits to patients? functional performance and bone health, but a large-scale study is needed to confirm this assumption. UR - https://cancer.jmir.org/2021/2/e25569 UR - http://dx.doi.org/10.2196/25569 UR - http://www.ncbi.nlm.nih.gov/pubmed/34132645 ID - info:doi/10.2196/25569 ER - TY - JOUR AU - Lamprell, Klay AU - Fajardo Pulido, Diana AU - Tran, Yvonne AU - Nic Giolla Easpaig, Bróna AU - Liauw, Winston AU - Arnolda, Gaston AU - Braithwaite, Jeffrey PY - 2021/2/26 TI - Personal Accounts of Young-Onset Colorectal Cancer Organized as Patient-Reported Data: Protocol for a Mixed Methods Study JO - JMIR Res Protoc SP - e25056 VL - 10 IS - 2 KW - colorectal cancer KW - PROMs KW - young-onset cancer KW - cancer KW - patient reported outcome N2 - Background: Young-onset colorectal cancer is a contemporary issue in need of substantial research input. The incidence of colorectal cancer in adults younger than 50 years is rising in contrast to the decreasing incidence of this cancer in older adults. People with young-onset colorectal cancer may be at that stage of life in which they are establishing their careers, building relationships with long-term partners, raising children, and assembling a financial base for the future. A qualitative study designed to facilitate triangulation with extant quantitative patient-reported data would contribute the first comprehensive resource for understanding how this distinct patient population experiences health services and the outcomes of care throughout the patient pathway. Objective: The aim of this study was to undertake a mixed-methods study of qualitative patient-reported data on young-onset colorectal cancer experiences and outcomes. Methods: This is a study of web-based unsolicited patient stories recounting experiences of health services and clinical outcomes related to young-onset colorectal cancer. Personal Recollections Organized as Data (PROD) is a novel methodology for understanding patients? health experiences in order to improve care. PROD pivots qualitative data collection and analysis around the validated domains and dimensions measured in patient-reported outcome and patient-reported experience questionnaires. PROD involves 4 processes: (1) classifying attributes of the contributing patients, their disease states, their routes to diagnosis, and the clinical features of their treatment and posttreatment; (2) coding texts into the patient-reported experience and patient-reported outcome domains and dimensions, defined a priori, according to phases of the patient pathway; (3) thematic analysis of content within and across each domain; and (4) quantitative text analysis of the narrative content. Results: Relevant patient stories have been identified, and permission has been obtained for use of the texts in primary research. The approval for this study was granted by the Macquarie University Human Research Ethics Committee in June 2020. The analytical framework was established in September 2020, and data collection commenced in October 2020. We will complete the analysis in March 2021 and we aim to publish the results in mid-2021. Conclusions: The findings of this study will identify areas for improvement in the PROD methodology and inform the development of a large-scale study of young-onset colorectal cancer patient narratives. We believe that this will be the first qualitative study to identify and describe the patient pathway from symptom self-identification to help-seeking through to diagnosis, treatment, and to survivorship or palliation for people with young-onset colorectal cancer. International Registered Report Identifier (IRRID): DERR1-10.2196/25056 UR - https://www.researchprotocols.org/2021/2/e25056 UR - http://dx.doi.org/10.2196/25056 UR - http://www.ncbi.nlm.nih.gov/pubmed/33635274 ID - info:doi/10.2196/25056 ER - TY - JOUR AU - Pluimakers, Vincent AU - Fiocco, Marta AU - van Atteveld, Jenneke AU - Hobbelink, Monique AU - Bresters, Dorine AU - Van Dulmen-den Broeder, Eline AU - Van der Heiden-van der Loo, Margriet AU - Janssens, O. Geert AU - Kremer, Leontien AU - Loonen, Jacqueline AU - Louwerens, Marloes AU - Van der Pal, Helena AU - Ronckers, Cécile AU - Van Santen, Hanneke AU - Versluys, Birgitta AU - De Vries, Andrica AU - Van den Heuvel-Eibrink, Marry AU - Neggers, Sebastian PY - 2021/1/27 TI - Metabolic Syndrome Parameters, Determinants, and Biomarkers in Adult Survivors of Childhood Cancer: Protocol for the Dutch Childhood Cancer Survivor Study on Metabolic Syndrome (Dutch LATER METS) JO - JMIR Res Protoc SP - e21256 VL - 10 IS - 1 KW - metabolic syndrome KW - childhood cancer survivor KW - Dutch Childhood Cancer Survivor Study KW - methodology KW - Dutch LATER METS N2 - Background: Potential late effects of treatment for childhood cancer include adiposity, insulin resistance, dyslipidemia, and hypertension. These risk factors cluster together as metabolic syndrome and increase the risk for development of diabetes mellitus and cardio- and cerebrovascular disease. Knowledge on risk factors, timely diagnosis, and preventive strategies is of importance to prevent cardio- and cerebrovascular complications and improve quality of life. Currently, no national cohort studies on the prevalence and determinants of metabolic syndrome in childhood cancer survivors, including biomarkers and genetic predisposition, are available. Objective: The objectives of the Dutch LATER METS study are to assess 1) the prevalence and risk factors of metabolic syndrome and its separate components, and 2) the potential diagnostic and predictive value of additional biomarkers for surveillance of metabolic syndrome in the national cohort of adult long-term survivors of childhood cancer. Methods: This is a cross-sectional study based on recruitment of all survivors treated in the Netherlands between 1963 and 2002. Metabolic syndrome will be classified according to the definitions of the third Adult Treatment Panel Report of the National Cholesterol Education Program as well as the Joint Interim Statement and compared to reference data. Dual-energy x-ray absorptiometry scans were performed to assess body composition in more detail. The effect of patient characteristics, previous treatment, and genetic variation on the risk of metabolic syndrome will be assessed. The diagnostic and predictive value of novel biomarkers will be tested. Results: Patient accrual started in 2016 and lasted until April 2020. A total of 2380 survivors from 7 pediatric oncology hospitals have participated. From July 2020, biomarker testing, single nucleotide polymorphism analysis, and data analysis will be performed. Conclusions: The Dutch LATER METS study will provide knowledge on clinical and genetic determinants of metabolic syndrome and the diagnostic value of biomarkers in childhood cancer survivors. The results of this study will be used to optimize surveillance guidelines for metabolic syndrome in survivors based on enhanced risk stratification and screening strategies. This will improve diagnosis of metabolic syndrome and prevent complications. International Registered Report Identifier (IRRID): DERR1-10.2196/21256 UR - https://www.researchprotocols.org/2021/1/e21256 UR - http://dx.doi.org/10.2196/21256 UR - http://www.ncbi.nlm.nih.gov/pubmed/32750002 ID - info:doi/10.2196/21256 ER - TY - JOUR AU - Calaminus, Gabriele AU - Baust, Katja AU - Berger, Claire AU - Byrne, Julianne AU - Binder, Harald AU - Casagranda, Leonie AU - Grabow, Desiree AU - Grootenhuis, Martha AU - Kaatsch, Peter AU - Kaiser, Melanie AU - Kepak, Tomas AU - Kepáková, Kate?ina AU - Kremer, M. Leontien C. AU - Kruseova, Jarmila AU - Luks, Ales AU - Spix, Claudia AU - van den Berg, Marleen AU - van den Heuvel-Eibrink, M. Marry M. AU - van Dulmen-den Broeder, Eline AU - Kuonen, Rahel AU - Sommer, Grit AU - Kuehni, Claudia PY - 2021/1/25 TI - Health-Related Quality of Life in European Childhood Cancer Survivors: Protocol for a Study Within PanCareLIFE JO - JMIR Res Protoc SP - e21851 VL - 10 IS - 1 KW - children KW - adolescents KW - neoplasms KW - quality of life KW - health status KW - Europe KW - epidemiology KW - survivors of childhood cancer N2 - Background: Survival after childhood cancer has improved to more than 80% during the last few years, leading to an increased number of childhood cancer survivors. Cancer itself, or its treatment, may cause chronic health conditions, including somatic and mental sequelae, which may affect survivors? health-related quality of life (HRQoL). Objective: The project PanCareLIFE aims to establish a large database with comprehensive data on childhood cancer survivors from different European countries, including data on HRQoL. Within PanCareLIFE, this study aims to describe HRQoL in survivors, investigate predictors of HRQoL, and describe the association of HRQoL with hearing and female fertility impairment. This paper describes the design of the HRQoL study, the origin of data, strategies for data collection, and sampling characteristics of survivors from each contributing country. Methods: A total of 6 institutions from 5 European countries (the Czech Republic, France, Germany, the Netherlands, and Switzerland) provided data on HRQoL assessed with the Short Form 36 and on relevant predictors. The central PanCareLIFE data center aggregated the data and harmonized the variables between the institutions. Survivors were eligible if they received a diagnosis of cancer according to the 12 main groups of the International Classification of Childhood Cancer, 3rd edition, or Langerhans cell histiocytosis; were aged ?18 years at the time of diagnosis; were residents of the respective country at the time of diagnosis; had survived ?5 years after cancer diagnosis; were aged ?18 years at the time of the questionnaire survey; and did not refuse to registration in the national or local childhood cancer cohort. Results: We identified 24,993 eligible survivors. Of those, 19,268 survivors received a questionnaire and 9871 survivors participated, resulting in response rates of 9871/24,993 (39.50%) of eligible survivors and of 9871/19,268 (51.23%) invited survivors. Most participants were diagnosed with cancer between the ages of 10 and 14 years (3448/9871, 34.93%) or <5 years (3201/9871, 32.43%). The median age was 8 years. Of the 9871 participants, 3157 (31.97%) were survivors of leukemia, 2075 (21.02%) lymphoma, and 1356 (13.7%) central nervous system (CNS) tumors. Most participants (9225/9871, 93.46%) had no history of a subsequent tumor; 77.45% (7645/9871) received chemotherapy with or without other treatments. More than half (5460/9871, 55.31%) were aged 25 to 34 years at the time of the HRQoL study. Participating survivors differed from nonparticipants; participants were more often women, survivors of leukemia or lymphoma, and less frequently, survivors of CNS tumors than nonparticipants. Conclusions: PanCareLIFE successfully assessed HRQoL and its predictors in 9871 European survivors of childhood cancer. This large population will permit detailed investigations of HRQoL after childhood cancer, particularly the impact of hearing and female fertility impairment on HRQoL. International Registered Report Identifier (IRRID): RR1-10.2196/21851 UR - http://www.researchprotocols.org/2021/1/e21851/ UR - http://dx.doi.org/10.2196/21851 UR - http://www.ncbi.nlm.nih.gov/pubmed/33492237 ID - info:doi/10.2196/21851 ER - TY - JOUR AU - Beran, Tanya AU - Pearson, Reynolds Jacqueline AU - Lashewicz, Bonnie AU - Baggott, Sandy PY - 2020/11/19 TI - Perspectives of Child Life Specialists After Many Years of Working With a Humanoid Robot in a Pediatric Hospital: Narrative Design JO - J Med Internet Res SP - e23496 VL - 22 IS - 11 KW - child life KW - support KW - pediatric KW - distraction KW - robotics KW - human-robot interaction N2 - Background: Child life specialists (CLSs) play an important role in supporting patients and their families during their visits to a children?s hospital. Although CLSs are equipped with considerable expertise to support families during some of the most difficult moments of their lives, we introduced an additional resource to them in the form of a humanoid robot named MEDi. Objective: The aim of this study is to explore the experiences of CLSs using a robot to support children. Methods: We interviewed 7 CLSs who had worked with this robot for several years. The transcribed interviews were analyzed using open and axial coding. Results: The first main theme that emerged was the process of navigating from fear to friendship in learning to use a humanoid robot for therapeutic support. The second major theme was MEDi as a source of connection and support to children. CLSs? perceptions of MEDi as an adaptable resource and working with the limits of MEDi constituted the last 2 themes. Conclusions: These descriptions show how CLSs can incorporate a robot into their practice. UR - http://www.jmir.org/2020/11/e23496/ UR - http://dx.doi.org/10.2196/23496 UR - http://www.ncbi.nlm.nih.gov/pubmed/33211014 ID - info:doi/10.2196/23496 ER - TY - JOUR AU - Gilljam, Britt-Mari AU - Nygren, M. Jens AU - Svedberg, Petra AU - Arvidsson, Susann PY - 2020/7/28 TI - Impact of an Electronic Health Service on Child Participation in Pediatric Oncology Care: Quasiexperimental Study JO - J Med Internet Res SP - e17673 VL - 22 IS - 7 KW - cancer KW - child care KW - communication KW - eHealth KW - patient participation N2 - Background: For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. Objective: The aim of this study was to investigate children?s participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. Methods: A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children?s levels of participation guided by a framework based on Shier?s model of participation. Results: Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier?s participation model: children were listened to, children were supported to express their views, and children?s views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. Conclusions: This study shows that the eHealth service Sisom can increase children?s participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children?s health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care. UR - http://www.jmir.org/2020/7/e17673/ UR - http://dx.doi.org/10.2196/17673 UR - http://www.ncbi.nlm.nih.gov/pubmed/32720907 ID - info:doi/10.2196/17673 ER - TY - JOUR AU - Park, Kyung Bu AU - Kim, Yoon Ji AU - Rogers, E. Valerie PY - 2020/7/28 TI - Development and Usability Evaluation of a Facebook-Based Intervention Program for Childhood Cancer Patients: Mixed Methods Study JO - J Med Internet Res SP - e18779 VL - 22 IS - 7 KW - pediatric cancer patients KW - childhood cancer KW - social network site KW - Facebook KW - usability N2 - Background: Childhood cancers previously considered to be incurable now have 5-year survival rates up to 84%. Nevertheless, these patients remain at risk of morbidity and mortality from therapy-related complications. Thus, patient education and self-management strategies for promoting a healthy lifestyle are of tantamount importance for improving short- and long-term health outcomes. A Facebook-based ?Healthy Teens for Soaam? (a Korean term for childhood cancers) program was developed to help improve knowledge and self-management practices of teens with cancer related to their disease and treatment. Objective: The two-fold purpose of this usability study was (1) to describe the process of developing an 8-week Facebook-based intervention program for teens with cancer, and (2) to evaluate its usability to refine the program. Methods: Multiple phases and methods were employed to develop and evaluate the usability of the program. Study phases included: (1) needs assessment through focus group interviews and qualitative content analysis, (2) development of module content, (3) expert review and feedback on module content, (4) Facebook-based program development, (5) usability evaluation by heuristic evaluation, (6) usability evaluation by targeted end-user testing, and (7) modification and final version of the program. Usability of the final version was confirmed through feedback loops of these phases. Results: Based on 6 focus group discussion sessions, it was determined that teens with cancer were interested in seeing stories of successful childhood cancer cases and self-management after discharge, and preferred multimedia content over text. Therefore, each Facebook module was redesigned to include multimedia materials such as relevant video clips tailored for teens. Usability assessed by heuristic evaluation and user testing revealed several critical usability issues, which were then revised. Potential end users tested the final program and perceived it to be usable and useful for teens with cancer. Conclusions: To our knowledge, ?Healthy Teens for Soaam? is the first Facebook-based intervention program for teens with cancer. We actively worked with current childhood cancer patients and survivors to develop and improve this program, achieved good usability, and met the expressed needs and preferences of target end users. This 8-week Facebook-based educational program for teens with cancer, developed as the first step of an upcoming intervention study, will be useful for improving knowledge and self-management strategies of teens. UR - http://www.jmir.org/2020/7/e18779/ UR - http://dx.doi.org/10.2196/18779 UR - http://www.ncbi.nlm.nih.gov/pubmed/32720897 ID - info:doi/10.2196/18779 ER - TY - JOUR AU - Eliasen, Astrid AU - Abildtoft, Kramme Mikkel AU - Krogh, Steen Niels AU - Rechnitzer, Catherine AU - Brok, Sune Jesper AU - Mathiasen, René AU - Schmiegelow, Kjeld AU - Dalhoff, Peder Kim PY - 2020/7/20 TI - Smartphone App to Self-Monitor Nausea During Pediatric Chemotherapy Treatment: User-Centered Design Process JO - JMIR Mhealth Uhealth SP - e18564 VL - 8 IS - 7 KW - mobile applications KW - patient-reported outcome measures KW - patient compliance KW - neoplasms KW - antiemetics KW - nausea KW - vomiting KW - cancer KW - children KW - app N2 - Background: Nausea and vomiting are common and distressing side effects for children receiving chemotherapy. Limited evidence is available to guide antiemetic recommendations; therefore, prospective and reliable evaluation of antiemetic efficacy is needed. Smartphone apps can be used to effortlessly and precisely collect patient-reported outcomes in real time. Objective: Our objective was to develop a smartphone app to monitor nausea and vomiting episodes in pediatric cancer patients aged 0 to 18 years and to test its usability and adherence to its use. Methods: We used a user-centered design process and the evolutionary prototype model to develop and evaluate the app. Multidisciplinary group discussions and several rounds of patient feedback and modification were conducted. We translated the validated Pediatric Nausea Assessment Tool to assess nausea severity in children aged 4 to 18 years. The child?s own term for nausea was interactively incorporated in the nausea severity question, with response options expressed as 4 illustrative faces. Parent-reported outcomes were used for children aged 0 to 3 years. Reminders were sent using push notifications in order to ensure high response rates. Children aged 0 to 18 years who were undergoing chemotherapy were recruited from the Department of Pediatric Oncology at Copenhagen University Hospital Rigshospitalet to evaluate the app. Results: The app?s most important function was to record nausea severity in children. After assistance from a researcher, children aged 4 to 18 years were able to report their symptoms in the app, and parents were able to report symptoms for their children aged 0 to 3 years. Children (n=20, aged 2.0-17.5 years) and their parents evaluated the app prospectively during a collective total of 60 chemotherapy cycles. They expressed that the app was user-friendly, intuitive, and that the time spent on data entry was fair. The response rates were on average 92%, 93%, and 80% for the day before, the first day of, and the next 3 days after chemotherapy, respectively. Researchers and clinicians were able to obtain an overview of the patient?s chemotherapy dates and responses through a secure and encrypted web-based administrative portal. Data could be downloaded for further analysis. Conclusions: The user-friendly app could be used to facilitate future pediatric antiemetic trials and to refine antiemetic treatment during chemotherapy. UR - https://mhealth.jmir.org/2020/7/e18564 UR - http://dx.doi.org/10.2196/18564 UR - http://www.ncbi.nlm.nih.gov/pubmed/32706744 ID - info:doi/10.2196/18564 ER - TY - JOUR AU - Schindera, Christina AU - Kuehni, Elisabeth Claudia AU - Pavlovic, Mladen AU - Haegler-Laube, Simona Eva AU - Rhyner, Daniel AU - Waespe, Nicolas AU - Roessler, Jochen AU - Suter, Thomas AU - von der Weid, Xavier Nicolas PY - 2020/6/10 TI - Diagnosing Preclinical Cardiac Dysfunction in Swiss Childhood Cancer Survivors: Protocol for a Single-Center Cohort Study JO - JMIR Res Protoc SP - e17724 VL - 9 IS - 6 KW - cardiotoxicity KW - Switzerland KW - echocardiography KW - speckle tracking KW - strain KW - anthracyclines KW - alkylating agents KW - steroids KW - cardiac radiation N2 - Background: Cardiovascular disease is the leading nonmalignant cause of late deaths in childhood cancer survivors. Cardiovascular disease and cardiac dysfunction can remain asymptomatic for many years, but eventually lead to progressive disease with high morbidity and mortality. Early detection and intervention are therefore crucial to improve outcomes. Objective: In our study, we aim to assess the prevalence of preclinical cardiac dysfunction in adult childhood cancer survivors using conventional and speckle tracking echocardiography; determine the association between cardiac dysfunction and treatment-related risk factors (anthracyclines, alkylating agents, steroids, cardiac radiation) and modifiable cardiovascular risk factors (abdominal obesity, hypertension); investigate the development of cardiac dysfunction longitudinally in a defined cohort; study the association between cardiac dysfunction and other health outcomes like pulmonary disease, endocrine disease, renal disease, quality of life, fatigue, strength and endurance, and physical activity; and gain experience conducting a clinical study of childhood cancer survivors that will be extended to a national, multicenter study of cardiac complications. Methods: For this retrospective cohort study, we will invite ?5-year childhood cancer survivors who were treated at the University Children's Hospital Bern, Switzerland with any chemotherapy or cardiac radiation since 1976 and who are ?18 years of age at the time of the study for a cardiac assessment at the University Hospital Bern. This includes 544 childhood cancer survivors, of whom about half were treated with anthracyclines and/or cardiac radiation and half with any other chemotherapy. The standardized cardiac assessment includes a medical history focusing on signs of cardiovascular disease and its risk factors, a physical examination, anthropometry, vital parameters, the 1-minute sit-to-stand test, and echocardiography including 2-dimensional speckle tracking. Results: We will invite 544 eligible childhood cancer survivors (median age at the time of the study, 32.5 years; median length of time since diagnosis, 25.0 years) for a cardiac assessment. Of these survivors, 300 (55%) are at high risk, and 244 (45%) are at standard risk of cardiac dysfunction. Conclusions: This study will determine the prevalence of preclinical cardiac dysfunction in Swiss childhood cancer survivors, inform whether speckle tracking echocardiography is more sensitive to cardiac dysfunction than conventional echocardiography, and give a detailed picture of risk factors for cardiac dysfunction. The results will help improve primary treatment and follow-up care of children with cancer. Trial Registration: ClinicalTrials.gov NCT03790943; https://clinicaltrials.gov/ct2/show/NCT03790943 International Registered Report Identifier (IRRID): DERR1-10.2196/17724 UR - http://www.researchprotocols.org/2020/6/e17724/ UR - http://dx.doi.org/10.2196/17724 UR - http://www.ncbi.nlm.nih.gov/pubmed/32269016 ID - info:doi/10.2196/17724 ER - TY - JOUR AU - Salsman, M. John AU - McLouth, E. Laurie AU - Cohn, Michael AU - Tooze, A. Janet AU - Sorkin, Mia AU - Moskowitz, T. Judith PY - 2020/5/28 TI - A Web-Based, Positive Emotion Skills Intervention for Enhancing Posttreatment Psychological Well-Being in Young Adult Cancer Survivors (EMPOWER): Protocol for a Single-Arm Feasibility Trial JO - JMIR Res Protoc SP - e17078 VL - 9 IS - 5 KW - emotions KW - telemedicine KW - happiness KW - eHealth KW - cancer KW - young adult KW - internet KW - mobile phone N2 - Background: Adolescent and young adult cancer survivors (AYAs) experience clinically significant distress and have limited access to supportive care services. Interventions to enhance psychological well-being have improved positive affect and reduced depression in clinical and healthy populations but have not been routinely tested in AYAs. Objective: The aim of this protocol is to (1) test the feasibility and acceptability of a Web-based positive emotion skills intervention for posttreatment AYAs called Enhancing Management of Psychological Outcomes With Emotion Regulation (EMPOWER) and (2) examine proof of concept for reducing psychological distress and enhancing psychological well-being. Methods: The intervention development and testing are taking place in 3 phases. In phase 1, we adapted the content of an existing, Web-based positive emotion intervention so that it would be suitable for AYAs. EMPOWER targets 8 skills (noticing positive events, capitalizing, gratitude, mindfulness, positive reappraisal, goal setting, personal strengths, and acts of kindness) and is delivered remotely as a 5-week, Web-based intervention. Phase 2 consisted of a pilot test of EMPOWER in a single-arm trial to evaluate feasibility, acceptability, retention, and adherence and to collect data on psychosocial outcomes for proof of concept. In phase 3, we are refining study procedures and conducting a second pilot test. Results: The project was part of a career development award. Pilot work began in June 2015, and data collection was completed in March 2019. The analysis is ongoing, and results will be submitted for publication by May 2020. Conclusions: If this intervention proves feasible and acceptable, EMPOWER will be primed for a subsequent large, multisite randomized controlled trial. As a scalable intervention, it will be ideally suited for AYA survivors who would otherwise not have access to supportive care interventions to help manage posttreatment distress and enhance well-being. Trial Registration: ClinicalTrials.gov NCT02832154, https://clinicaltrials.gov/ct2/show/NCT02832154. International Registered Report Identifier (IRRID): DERR1-10.2196/17078 UR - http://www.researchprotocols.org/2020/5/e17078/ UR - http://dx.doi.org/10.2196/17078 UR - http://www.ncbi.nlm.nih.gov/pubmed/32463014 ID - info:doi/10.2196/17078 ER - TY - JOUR AU - Holmen, Heidi AU - Riiser, Kirsti AU - Winger, Anette PY - 2020/2/28 TI - Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review JO - J Med Internet Res SP - e16248 VL - 22 IS - 2 KW - eHealth KW - home-based KW - pediatric palliative care KW - pediatric KW - children KW - family KW - communication KW - palliative care N2 - Background: Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. Objective: This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research. Methods: We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged ?18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies. Results: We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals. Conclusions: The strengths of the conclusions are limited by the studies? methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals. Trial Registration: PROSPERO CRD42018119051; https://tinyurl.com/rtsw5ky UR - http://www.jmir.org/2020/2/e16248/ UR - http://dx.doi.org/10.2196/16248 UR - http://www.ncbi.nlm.nih.gov/pubmed/32130127 ID - info:doi/10.2196/16248 ER - TY - JOUR AU - Hanghøj, Signe AU - Boisen, A. Kirsten AU - Hjerming, Maiken AU - Elsbernd, Abbey AU - Pappot, Helle PY - 2020/1/2 TI - Usability of a Mobile Phone App Aimed at Adolescents and Young Adults During and After Cancer Treatment: Qualitative Study JO - JMIR Cancer SP - e15008 VL - 6 IS - 1 KW - AYA KW - adolescent and young adult KW - app KW - cancer KW - co-creation KW - mHealth KW - mobile phone KW - think-aloud test KW - usability N2 - Background: Adolescent and young adult (AYA) cancer patients are seldom involved in the process of testing cancer-related apps. As such, knowledge about youth-specific content, functionalities, and design is sparse. As a part of a co-creation process of developing the mobile phone app Kræftværket, AYAs in treatment for cancer and in follow-up participated in a usability think-aloud test of a prototype of the app. Thus, the app was initiated, created, and evaluated by AYAs with cancer experience. Objective: The aim of this study was to explore the results of a think-aloud test administered to see how the prototype of the app Kræftværket was used by AYAs in treatment for cancer and in follow-up, and to investigate the strengths and weaknesses of the app. Methods: A total of 20 AYA cancer patients aged 16 to 29 years (n=10 on treatment, n=10 in follow-up) were provided with the first version of the co-created mobile phone app Kræftværket during a 6-week test period (April-May 2018). After the test period, 15 participated in individual usability think-aloud tests. The tests were video-recorded, transcribed verbatim, and analyzed using a thematic analysis approach. Results: The thematic analysis led to the following themes and subthemes: navigation (subthemes: intuition, features, buttons, home page, profile), visual and graphic design (subthemes: overview, text and colors, photos, videos, YouTube), and usefulness (subthemes: notifications, posts, adding). The analysis identified gender differences in app utilization?female participants seemed to be more familiar with parts of the app. The app seemed to be more relevant to AYAs receiving treatment due to app functions such as tracking symptoms and searching for relevant information. Lack of notifications and incorrect counting of posts were perceived as barriers to using the app. Conclusions: Usability testing is crucial to meet the needs of the AYA target audience. AYA cancer apps should preferably be relevant, targeted, and unique, and include a tracking function and AYA-produced videos. Notifications and correct marking and ordering of posts are critical to make apps engaging and dynamic. Further research is recommended to evaluate the Kræftværket app with the input of more AYAs. UR - https://cancer.jmir.org/2020/1/e15008 UR - http://dx.doi.org/10.2196/15008 UR - http://www.ncbi.nlm.nih.gov/pubmed/31895046 ID - info:doi/10.2196/15008 ER - TY - JOUR AU - Belle, Naomi Fabiën AU - Beck Popovic, Maja AU - Ansari, Marc AU - Otth, Maria AU - Kuehni, Elisabeth Claudia AU - Bochud, Murielle PY - 2019/11/18 TI - Nutritional Assessment of Childhood Cancer Survivors (the Swiss Childhood Cancer Survivor Study-Nutrition): Protocol for a Multicenter Observational Study JO - JMIR Res Protoc SP - e14427 VL - 8 IS - 11 KW - child KW - cancer survivors KW - urine specimen collection KW - diet surveys KW - food frequency questionnaire KW - Swiss Childhood Cancer Registry KW - Switzerland N2 - Background: Childhood cancer survivors are at high risk of developing adverse late health effects. Poor nutritional intake may contribute to this risk, but information about dietary intake is limited. Objective: This study will assess childhood cancer survivors? dietary intake and compare two dietary assessment tools: a self-reported food frequency questionnaire, and dietary measurements from urine spot samples. Methods: In a substudy of the Swiss Childhood Cancer Survivor Study (SCCSS), SCCSS-Nutrition, we assessed childhood cancer survivors? dietary intake via a validated food frequency questionnaire. We sent a urine spot collection kit to a subset of 212 childhood cancer survivors from the French-speaking region of Switzerland to analyze urinary sodium, potassium, urea, urate, creatinine, and phosphate content. We will compare the food frequency questionnaire results with the urine spot analyses to quantify childhood cancer survivors? intake of various nutrients. We collected data between March 2016 and March 2018. Results: We contacted 1599 childhood cancer survivors, of whom 919 (57.47%) returned a food frequency questionnaire. We excluded 11 childhood cancer survivors who were pregnant or were breastfeeding, 35 with missing dietary data, and 71 who had unreliable food frequency questionnaire data, resulting in 802 childhood cancer survivors available for food frequency questionnaire analyses. To a subset of 212 childhood cancer survivors in French-speaking Switzerland we sent a urine spot collection kit, and 111 (52.4%) returned a urine sample. We expect to have the results from analyses of these samples in mid-2019. Conclusions: The SCCSS-Nutrition study has collected in-depth dietary data that will allow us to assess dietary intake and quality and compare two dietary assessment tools. This study will contribute to the knowledge of nutrition among childhood cancer survivors and is a step toward surveillance guidelines and targeted nutritional recommendations for childhood cancer survivors in Switzerland. Trial Registration: ClinicalTrials.gov NCT03297034; https://clinicaltrials.gov/ct2/show/NCT03297034 International Registered Report Identifier (IRRID): DERR1-10.2196/14427 UR - http://www.researchprotocols.org/2019/11/e14427/ UR - http://dx.doi.org/10.2196/14427 UR - http://www.ncbi.nlm.nih.gov/pubmed/31738177 ID - info:doi/10.2196/14427 ER - TY - JOUR AU - Greer, Stephanie AU - Ramo, Danielle AU - Chang, Yin-Juei AU - Fu, Michael AU - Moskowitz, Judith AU - Haritatos, Jana PY - 2019/10/31 TI - Use of the Chatbot ?Vivibot? to Deliver Positive Psychology Skills and Promote Well-Being Among Young People After Cancer Treatment: Randomized Controlled Feasibility Trial JO - JMIR Mhealth Uhealth SP - e15018 VL - 7 IS - 10 KW - chatbot KW - positive psychology KW - young adult KW - cancer N2 - Background: Positive psychology interventions show promise for reducing psychosocial distress associated with health adversity and have the potential to be widely disseminated to young adults through technology. Objective: This pilot randomized controlled trial examined the feasibility of delivering positive psychology skills via the Vivibot chatbot and its effects on key psychosocial well-being outcomes in young adults treated for cancer. Methods: Young adults (age 18-29 years) were recruited within 5 years of completing active cancer treatment by using the Vivibot chatbot on Facebook messenger. Participants were randomized to either immediate access to Vivibot content (experimental group) or access to only daily emotion ratings and access to full chatbot content after 4 weeks (control). Created using a human-centered design process with young adults treated for cancer, Vivibot content includes 4 weeks of positive psychology skills, daily emotion ratings, video, and other material produced by survivors, and periodic feedback check-ins. All participants were assessed for psychosocial well-being via online surveys at baseline and weeks 2, 4, and 8. Analyses examined chatbot engagement and open-ended feedback on likability and perceived helpfulness and compared experimental and control groups with regard to anxiety and depression symptoms and positive and negative emotion changes between baseline and 4 weeks. To verify the main effects, follow-up analyses compared changes in the main outcomes between 4 and 8 weeks in the control group once participants had access to all chatbot content. Results: Data from 45 young adults (36 women; mean age: 25 [SD 2.9]; experimental group: n=25; control group: n=20) were analyzed. Participants in the experimental group spent an average of 74 minutes across an average of 12 active sessions chatting with Vivibot and rated their experience as helpful (mean 2.0/3, SD 0.72) and would recommend it to a friend (mean 6.9/10; SD 2.6). Open-ended feedback noted its nonjudgmental nature as a particular benefit of the chatbot. After 4 weeks, participants in the experimental group reported an average reduction in anxiety of 2.58 standardized t-score units, while the control group reported an increase in anxiety of 0.7 units. A mixed-effects models revealed a trend-level (P=.09) interaction between group and time, with an effect size of 0.41. Those in the experimental group also experienced greater reductions in anxiety when they engaged in more sessions (z=?1.9, P=.06). There were no significant (or trend level) effects by group on changes in depression, positive emotion, or negative emotion. Conclusions: The chatbot format provides a useful and acceptable way of delivering positive psychology skills to young adults who have undergone cancer treatment and supports anxiety reduction. Further analysis with a larger sample size is required to confirm this pattern. UR - http://mhealth.jmir.org/2019/10/e15018/ UR - http://dx.doi.org/10.2196/15018 UR - http://www.ncbi.nlm.nih.gov/pubmed/31674920 ID - info:doi/10.2196/15018 ER - TY - JOUR AU - Pappot, Helle AU - Assam Taarnhøj, Gry AU - Elsbernd, Abbey AU - Hjerming, Maiken AU - Hanghøj, Signe AU - Jensen, Marc AU - Boisen, Arntz Kirsten PY - 2019/10/3 TI - Health-Related Quality of Life Before and After Use of a Smartphone App for Adolescents and Young Adults With Cancer: Pre-Post Interventional Study JO - JMIR Mhealth Uhealth SP - e13829 VL - 7 IS - 10 KW - adolescent KW - young adult KW - cancer KW - mHealth KW - smartphone KW - survivorship KW - quality of life N2 - Background: Adolescent and young adult (AYA) patients with cancer are a group with underexplored needs throughout treatment and in survivorship. This missing knowledge can influence their quality of life (QoL). Given this fact, we have developed a smartphone app based on a cocreation process and have an investigation of QoL among users planned as part of pilot testing this app. Future research is warranted to determine the effect of mobile health (mHealth) tools such as smartphone apps among the AYA cancer population. Objective: The aim of this study was to investigate the feasibility of a smartphone app among AYA patients with cancer in active treatment and posttreatment, in a pilot test by measuring health-related QoL before and after the use of the app. Methods: Participants were recruited via the youth support initiative and social organization for AYAs with cancer, Kræftværket, based at Rigshospitalet, University Hospital of Copenhagen, Denmark. Participants were evenly distributed in active treatment and posttreatment groups. After written informed consent, all participants were asked to use the app Kræftværket as they deemed appropriate over a 6-week period. The participants were asked to complete the 30-item European Organization for Research and Treatment of Cancer Quality of Life Questionnaire before and after the 6-week period. The collected QoL data were analyzed with t tests to determine differences between groups and from baseline. Results: In total, we enrolled 20 participants, 10 in active treatment and 10 posttreatment (median time after treatment was 4 months) group. Median age of the participants was 25 years. No differences in QoL were seen at baseline (P=.65). The posttreatment group experienced a significant increase in overall QoL after the 6-week period (global QoL: baseline 62.5, SD 22.3; after 6 weeks 80.8, SD 9.7; P=.04). For the group in active treatment, the QoL remained stable throughout the 6 weeks. Conclusions: This study shows the feasibility and possible effect on QoL associated with the use of an mHealth tool in AYA patients. mHealth support tools are warranted for this population. UR - https://mhealth.jmir.org/2019/10/e13829 UR - http://dx.doi.org/10.2196/13829 UR - http://www.ncbi.nlm.nih.gov/pubmed/31584008 ID - info:doi/10.2196/13829 ER - TY - JOUR AU - McCann, Lisa AU - McMillan, Anne Kathryn AU - Pugh, Gemma PY - 2019/07/31 TI - Digital Interventions to Support Adolescents and Young Adults With Cancer: Systematic Review JO - JMIR Cancer SP - e12071 VL - 5 IS - 2 KW - adolescent KW - neoplasms KW - telemedicine KW - systematic review KW - eHealth N2 - Background: The last decade has seen an increase in the number of digital health interventions designed to support adolescents and young adults (AYAs) with cancer. Objective: The objective of this review was to identify, characterize, and fully assess the quality, feasibility, and efficacy of existing digital health interventions developed specifically for AYAs, aged between 13 and 39 years, living with or beyond a cancer diagnosis. Methods: Searches were performed in PubMed, EMBASE, and Web of Science to identify digital health interventions designed specifically for AYA living with or beyond a cancer diagnosis. Data on the characteristics and outcomes of each intervention were synthesized. Results: A total of 4731 intervention studies were identified through the searches; 38 interventions (43 research papers) met the inclusion criteria. Most (20/38, 53%) were website-based interventions. Most studies focused on symptom management and medication adherence (15, 39%), behavior change (15, 39%), self-care (8, 21%), and emotional health (7, 18%). Most digital health interventions included multiple automated and communicative functions such as enriched information environments, automated follow-up messages, and access to peer support. Where reported (20, 53% of studies), AYAs? subjective experience of using the digital platform was typically positive. The overall quality of the studies was found to be good (mean Quality Assessment Criteria for Evaluating Primary Research Papers from a Variety of Fields scores >68%). Some studies reported feasibility outcomes (uptake, acceptability, and attrition) but were not sufficiently powered to comment on intervention effects. Conclusions: Numerous digital interventions have been developed and designed to support young people living with and beyond a diagnosis of cancer. However, many of these interventions have yet to be deployed, implemented, and evaluated at scale. UR - http://cancer.jmir.org/2019/2/e12071/ UR - http://dx.doi.org/10.2196/12071 UR - http://www.ncbi.nlm.nih.gov/pubmed/31368438 ID - info:doi/10.2196/12071 ER - TY - JOUR AU - Psihogios, M. Alexandra AU - Li, Yimei AU - Butler, Eliana AU - Hamilton, Jessica AU - Daniel, C. Lauren AU - Barakat, P. Lamia AU - Bonafide, P. Christopher AU - Schwartz, A. Lisa PY - 2019/04/18 TI - Text Message Responsivity in a 2-Way Short Message Service Pilot Intervention With Adolescent and Young Adult Survivors of Cancer JO - JMIR Mhealth Uhealth SP - e12547 VL - 7 IS - 4 KW - mHealth KW - adolescents KW - young adults KW - cancer KW - chronic illness KW - self-management N2 - Objective: Within a 2-way text messaging study in AYAs who recently completed treatment for cancer, we sought to evaluate text message responsivity across different types of text messages. Methods: AYAs who recently completed treatment for cancer (n=26; mean age=16 years; 62% female, 16/26 participants) received 2-way text messages about survivorship health topics over a 16-week period. Using participants? text message log data, we coded responsivity to text messages and evaluated trends in responsivity to unprompted text messages and prompted text messages of varying content (eg, medication reminders, appointment reminders, and texts about personal experiences as a cancer survivor). Results: Across prompted and unprompted text messages, responsivity rapidly decreased (P ?.001 and =.01, respectively) and plateaued by the third week of the intervention. However, participants were more responsive to prompted text messages (mean responsivity=46% by week 16) than unprompted messages (mean responsivity=10% by week 16). They also demonstrated stable responsivity to certain prompted content: medication reminders, appointment reminders, goal motivation, goal progress, and patient experience texts. Conclusions: Our methodology of evaluating text message responsivity revealed important patterns of engagement in a 2-way text message intervention for AYA cancer survivors. UR - http://mhealth.jmir.org/2019/4/e12547/ UR - http://dx.doi.org/10.2196/12547 UR - http://www.ncbi.nlm.nih.gov/pubmed/30998225 ID - info:doi/10.2196/12547 ER - TY - JOUR AU - Donovan, Elizabeth AU - Martin, R. Sarah AU - Seidman, C. Laura AU - Zeltzer, K. Lonnie AU - Cousineau, M. Tara AU - Payne, A. Laura AU - Trant, Meredith AU - Weiman, Marjorie AU - Knoll, Marla AU - Federman, C. Noah PY - 2019/03/18 TI - A Mobile-Based Mindfulness and Social Support Program for Adolescents and Young Adults With Sarcoma: Development and Pilot Testing JO - JMIR Mhealth Uhealth SP - e10921 VL - 7 IS - 3 KW - cancer KW - mindfulness KW - social support KW - mobile app KW - adolescents KW - young adults N2 - Background: Approximately 70,000 adolescents and young adults (AYA) are diagnosed with cancer each year in the United States. Sarcomas carry a particularly high symptom burden and are some of the most common cancers among AYA. Recent work has documented significant levels of unmet needs among AYA with cancer, particularly the need for psychosocial support. Mobile technology may be a cost-effective and efficient way to deliver a psychosocial intervention to AYA with cancer and cancer survivors. Objective: The two aims of this study were to (1) develop a pilot version of a mobile-based mindfulness and social support program and (2) evaluate program usage and acceptability. An exploratory aim was to examine change in psychosocial outcomes. Methods: Thirty-seven AYA with sarcoma or sarcoma survivors, parents, and health care providers participated in the study. Semistructured interviews were conducted with 10 AYA, parents of five of the adolescents, and six health care providers. Themes from the interviews helped to inform the development of a mobile-based mindfulness pilot program and a companion Facebook-based social support group. Twenty AYA consented to participate in a single-arm pre-post evaluation of the program; 17 downloaded the app and joined the Facebook group. Seven of these participants had participated in the semistructured interviews. Six additional health care providers consented to participate in the evaluation stage. Results: On average, participants completed 16.9 of the 28 unique sessions and used the mindfulness app for a mean 10.2 (SD 8.2) days during the 28-day evaluation period. The majority of participants (16/17) engaged in the social group and posted at least one reply to the moderator?s prompts. The mean number of responses per person to the moderator of the social group was 15.2 of 31 (49%, range 0%-97%). Both AYA and health care providers responded positively to the Mindfulness for Resilience in Illness program and offered useful recommendations for improvements. Exploratory psychosocial analyses indicated there were no significant differences from pretest to posttest on measures of perceived social support, mindfulness, body image, or psychological functioning. Conclusions: This study offers preliminary support for the feasibility and acceptability of a mobile-based mindfulness and Facebook-based social support program for AYA with sarcoma. The feedback from AYA and health care providers will assist in creating a fully developed intervention. Trial Registration: ClinicalTrials.gov NCT03130751; https://clinicaltrials.gov/ct2/show/NCT03130751 UR - http://mhealth.jmir.org/2019/3/e10921/ UR - http://dx.doi.org/10.2196/10921 UR - http://www.ncbi.nlm.nih.gov/pubmed/30882352 ID - info:doi/10.2196/10921 ER - TY - JOUR AU - Kakarmath, S. Sujay AU - de Redon, Emily AU - Centi, Jayne Amanda AU - Palacholla, Ramya AU - Kvedar, Joseph AU - Jethwani, Kamal AU - Agboola, Stephen PY - 2018/12/21 TI - Assessing the Usability of an Automated Continuous Temperature Monitoring Device (iThermonitor) in Pediatric Patients: Non-Randomized Pilot Study JO - JMIR Pediatr Parent SP - e10804 VL - 1 IS - 2 KW - connected health KW - continuous monitoring KW - mobile phone KW - pediatric KW - temperature N2 - Background: Fever is an important vital sign and often the first one to be assessed in a sick child. In acutely ill children, caregivers are expected to monitor a child?s body temperature at home after an initial medical consult. Fever literacy of many caregivers is known to be poor, leading to fever phobia. In children with a serious illness, the responsibility of periodically monitoring temperature can add substantially to the already stressful experience of caring for a sick child. Objective: The objective of this pilot study was to assess the feasibility of using the iThermonitor, an automated temperature measurement device, for continuous temperature monitoring in postoperative and postchemotherapy pediatric patients. Methods: We recruited 25 patient-caregiver dyads from the Pediatric Surgery Department at the Massachusetts General Hospital (MGH) and the Pediatric Cancer Centers at the MGH and the Dana Farber Cancer Institute. Enrolled dyads were asked to use the iThermonitor device for continuous temperature monitoring over a 2-week period. Surveys were administered to caregivers at enrollment and at study closeout. Caregivers were also asked to complete a daily event-monitoring log. The Generalized Anxiety Disorder-7 item questionnaire was also used to assess caregiver anxiety at enrollment and closeout. Results: Overall, 19 participant dyads completed the study. All 19 caregivers reported to have viewed temperature data on the study-provided iPad tablet at least once per day, and more than a third caregivers did so six or more times per day. Of all participants, 74% (14/19) reported experiencing an out-of-range temperature alert at least once during the study. Majority of caregivers reported that it was easy to learn how to use the device and that they felt confident about monitoring their child?s temperature with it. Only 21% (4/9) of caregivers reported concurrently using a device other than the iThermonitor to monitor their child?s temperature during the study. Continuous temperature monitoring was not associated with an increase in caregiver anxiety. Conclusions: The study results reveal that the iThermonitor is a highly feasible and easy-to-use device for continuous temperature monitoring in pediatric oncology and surgery patients. Trial Registration: ClinicalTrials.gov NCT02410252; https://clinicaltrials.gov/ct2/show/NCT02410252 (Archived by WebCite at http://www.webcitation.org/73LnO7hel) UR - http://pediatrics.jmir.org/2018/2/e10804/ UR - http://dx.doi.org/10.2196/10804 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518304 ID - info:doi/10.2196/10804 ER - TY - JOUR AU - Tutelman, R. Perri AU - Chambers, T. Christine AU - Stinson, N. Jennifer AU - Parker, A. Jennifer AU - Barwick, Melanie AU - Witteman, O. Holly AU - Jibb, Lindsay AU - Stinson, C. Hayley AU - Fernandez, V. Conrad AU - Nathan, C. Paul AU - Campbell, Fiona AU - Irwin, Karen PY - 2018/12/21 TI - The Implementation Effectiveness of a Freely Available Pediatric Cancer Pain Assessment App: A Pilot Implementation Study JO - JMIR Cancer SP - e10280 VL - 4 IS - 2 KW - cancer pain KW - pain assessment KW - pediatric cancer KW - mHealth KW - eHealth KW - implementation N2 - Background: Pain Squad is an evidence-based, freely available iOS app designed to assess pain in children with cancer. Once research-based technologies such as Pain Squad are validated, it is important to evaluate their performance in natural settings to optimize their real-world clinical use. Objective: The objective of this study was to evaluate the implementation effectiveness of Pain Squad in a natural setting. Methods: Parents of 149 children with cancer (aged 8-18 years) were contacted to invite their child to participate. Participating children downloaded Pain Squad on their own iOS devices from the Apple App Store and reported their pain using the app twice daily for 1 week. Participants then emailed their pain reports from the app to the research team and completed an online survey on their experiences. Key implementation outcomes included acceptability, appropriateness, cost, feasibility, fidelity, penetration, and sustainability. Results: Of the 149 parents contacted, 16 of their children agreed to participate. More than a third (6/16, 37.5%) of participating children returned their pain reports to the research team. Adherence to the pain assessments was 62.1% (mean 8.7/14 assessments). The 6 children who returned reports rated the app as highly feasible to download and use and rated their overall experience as acceptable. They also reported that they would be willing to sustain their Pain Squad use over several weeks and that they would recommend it to other children with cancer, which suggests that it may have potential for penetration. Conclusions: While Pain Squad was well received by the small number of children who completed the study, user uptake, engagement, and adherence were significant barriers to the implementation of Pain Squad in a natural setting. Implementation studies such as this highlight important challenges and opportunities for promoting the use and uptake of evidence-based technologies by the intended end-users. UR - http://cancer.jmir.org/2018/2/e10280/ UR - http://dx.doi.org/10.2196/10280 UR - http://www.ncbi.nlm.nih.gov/pubmed/30578200 ID - info:doi/10.2196/10280 ER - TY - JOUR AU - Woodford, Joanne AU - Wikman, Anna AU - Einhorn, Kim AU - Cernvall, Martin AU - Grönqvist, Helena AU - Romppala, Amanda AU - von Essen, Louise PY - 2018/12/18 TI - Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey JO - JMIR Ment Health SP - e10085 VL - 5 IS - 4 KW - anxiety KW - cancer KW - clinical trial KW - depression KW - eHealth KW - parents N2 - Background: Clinical trials are often challenged with issues of recruitment and retention. Little is known concerning general attitudes and preferences toward trial design and willingness to participate among parents of children treated for cancer. Furthermore, willingness to participate in internet-administered psychological interventions remains unexplored. In this study, we examined attitudes and preferences of the population regarding study procedures for a hypothetical trial of an internet-administered psychological intervention. In addition, differences in the response rate between modes of study invitation and willingness to engage in internet-administered interventions were examined. Objective: The primary objective of this study was to examine attitudes and preferences toward participating in an internet-administrated psychological intervention. The secondary objective was to examine the response rates and help-seeking behavior among parents of children treated for cancer. Methods: A cross-sectional, Web-based survey was conducted with parents of children who had completed cancer treatment. This Web-based survey examined self-reported emotional distress, prior help-seeking and receipt of psychological support, past research participation, attitudes toward research, preferences concerning recruitment procedures, and attitudes toward different types of trial design. Results: Of all the parents invited, 32.0% (112/350) completed the survey, with no difference in response rate between modes of study invitation (?21=0.6, P=.45). The majority (80/112, 71.4%) of parents responded that they had experienced past emotional distress. Responses indicated high (56/112, 50.0%) or somewhat high trust in research (51/112, 45.5%), and the majority of parents would accept, or maybe accept, internet-administered psychological support if offered (83/112, 74.1%). In addition, responses showed a preference for postal study invitation letters (86/112, 76.8%), sent by a researcher (84/112, 75.0%) with additional study information provided on the Web via text (81/112, 72.3%) and video (66/112, 58.9%). Overall, parents responded that trials utilizing a waiting list control, active alternative treatment control, or a patient-preference design were acceptable. Conclusions: Parents of children treated for cancer appear willing to participate in trials examining internet-administered psychological support. Findings of this study will inform the design of a feasibility trial examining internet-administered psychological support for the population. UR - http://mental.jmir.org/2018/4/e10085/ UR - http://dx.doi.org/10.2196/10085 UR - http://www.ncbi.nlm.nih.gov/pubmed/30563814 ID - info:doi/10.2196/10085 ER - TY - JOUR AU - Allingham, Catherine AU - Gillam, Lynn AU - McCarthy, Maria AU - Zacharin, Margaret AU - Jayasuriya, Sadunee AU - Heloury, Yves AU - Orme, Lisa AU - Sullivan, Michael AU - Peate, Michelle AU - Jayasinghe, Yasmin PY - 2018/11/28 TI - Fertility Preservation in Children and Adolescents With Cancer: Pilot of a Decision Aid for Parents of Children and Adolescents With Cancer JO - JMIR Pediatr Parent SP - e10463 VL - 1 IS - 2 KW - adolescent KW - cancer KW - decision aid KW - fertility preservation KW - pediatric KW - shared decision making KW - Values Clarification Exercise N2 - Background: Future infertility is a significant concern for survivors of childhood and adolescent cancer. Children and adolescents may have the opportunity to undergo fertility preservation (FP) procedures (which preserve gonadal tissue or gametes for future use) prior to the cancer treatment. However, the decision is very complex, as it is often made by parents as proxy decision makers at the time of cancer diagnosis, and is time-sensitive (needing to occur before the cancer treatment begins). Furthermore, FP procedures in children and adolescents are experimental and cannot guarantee future fertility. An uninformed decision may result in future decision regret. Objective: This study aimed to assess the acceptability, usability, and feasibility of a Web-based FP decision aid (DA) in parents of children and adolescents with cancer and clinicians. Fertility knowledge and decision regret were compared in families who reviewed the DA compared with those who did not. Methods: The Web-based DA was developed according to the International Patient Decision Aid Standards. A cross-sectional study of parents of patients with cancer, who discussed fertility, and clinicians at a tertiary children?s hospital was undertaken. The acceptability, usability, and feasibility of the DA were assessed using a pre-post survey design. Measures included the validated Decision Regret Scale, a purpose-designed fertility-related knowledge scale, questions regarding satisfaction with the DA, and open-ended responses for additional feedback. Furthermore, clinicians involved in FP were also invited to review the DA. Results: We enrolled 34 parents and 11 clinicians in this study. Participants who reviewed the DA (15 parents and 11 clinicians) expressed satisfaction with its content and functionality. Parents reported an improved understanding of cancer treatments, infertility, and FP procedures and did not report greater decision regret after DA review. Most parents (13/15, 86%) would recommend the DA to other parents. All clinicians had a consensus that this was a valid and relevant information source for all involved in fertility care. Conclusions: It is an international standard of care to discuss the impact of cancer treatment on fertility before cancer treatment. This is the first fertility DA for parents of children and adolescents with cancer and is found to be relevant and acceptable by parents and clinicians. This DA has the potential to help support parents to make informed fertility-related decisions for their children and adolescents. However, future research is needed to assess the impact of the DA on prospective decision making. UR - http://pediatrics.jmir.org/2018/2/e10463/ UR - http://dx.doi.org/10.2196/10463 UR - http://www.ncbi.nlm.nih.gov/pubmed/31518288 ID - info:doi/10.2196/10463 ER - TY - JOUR AU - Elsbernd, Abbey AU - Hjerming, Maiken AU - Visler, Camilla AU - Hjalgrim, Lyngsie Lisa AU - Niemann, Utoft Carsten AU - Boisen, Arntz Kirsten AU - Jakobsen, Jens AU - Pappot, Helle PY - 2018/11/01 TI - Using Cocreation in the Process of Designing a Smartphone App for Adolescents and Young Adults With Cancer: Prototype Development Study JO - JMIR Formativ Res SP - e23 VL - 2 IS - 2 KW - adolescent and young adult KW - cancer KW - cocreation KW - mHealth KW - oncology N2 - Background: Adolescent and young adult (AYA) oncology and hematology is a developing field of medicine, focusing on a population that faces many challenges throughout medical treatment and beyond. Mobile health (mHealth) interventions provide exciting new opportunities for improvement of health-related quality of life (HRQoL) in AYAs with cancer. Many smartphone apps are currently available for AYAs with cancer; however, for AYAs with cancer, very few apps have been designed with direct input from AYAs themselves or have demonstrated their effectiveness and benefit. Objective: The objective of this project was to develop the prototype of a smartphone app for AYAs with cancer through the process of cocreation, with the active input of AYAs who have received treatment for cancer directly impacting content and design. Methods: Patients were recruited from a population of Danish AYAs who had received treatment for cancer between the ages of 15 and 29 years. The cocreation process was completed over the course of 3 workshops and intermittent ad hoc meetings, where the recruited AYAs worked in coordination with 1 nurse, 1 doctor, and 2 representatives from a digital agency and app developer. During each workshop, participants prioritized their goals for the app. After new app content was developed, feedback was requested from the participants, and changes were made accordingly. This iterative process continued until consensus on final product features and design were achieved. Health care professionals provided minimal input and primarily performed observational roles in the workshops, with direct interaction limited to introducing the project and explaining measurement features of the app in development. Results: Three key features to be included in the prototype app were identified from the cocreation workshops: (1) a community forum; (2) an information library; and (3) a symptom and side-effect tracking tool. Bright, warm colors were selected for the app by the participating AYAs. The final prototype will be launched for pilot testing and implementation testing in February of 2018. Conclusions: The process of cocreation is a user-involved process that can create an end product that is useful and customized for the target population. This process, as such, is a beneficial process to utilize when addressing the specific needs of AYAs with cancer. The results of the here described app prototype will be evaluated in more detail in the near future. However, this description of the cocreation process in app development can be utilized for the creation of other mHealth interventions. UR - http://formative.jmir.org/2018/2/e23/ UR - http://dx.doi.org/10.2196/formative.9842 UR - http://www.ncbi.nlm.nih.gov/pubmed/30684439 ID - info:doi/10.2196/formative.9842 ER - TY - JOUR AU - Chalmers, Alexander John AU - Sansom-Daly, Margaret Ursula AU - Patterson, Pandora AU - McCowage, Geoffrey AU - Anazodo, Antoinette PY - 2018/08/29 TI - Psychosocial Assessment Using Telehealth in Adolescents and Young Adults With Cancer: A Partially Randomized Patient Preference Pilot Study JO - JMIR Res Protoc SP - e168 VL - 7 IS - 8 KW - telehealth KW - videoconferencing KW - psychosocial KW - psychological assessment KW - adolescent and young adult KW - cancer N2 - Background: Adolescent and young adults with cancer are at increased risk of psychosocial difficulties relative to their healthy peers. Current models of inpatient face-to-face psychosocial care might limit the capacity for clinicians to provide timely and personalized assessment and intervention for this group. Telehealth offers a promising alternative toward increasing access to the provision of evidence-based psychosocial assessment and treatment for adolescent and young adults with cancer. Objective: This pilot study aimed to assess the feasibility and acceptability for both patients and clinicians of providing a psychosocial assessment via telehealth to adolescents and young adults currently receiving treatment for cancer, relative to face-to-face delivery. Methods: We included patients who were aged 15-25 years, currently receiving treatment, could speak English well, and medically stable. Patients were recruited from oncology clinics or wards from 5 hospitals located across Sydney and Canberra, Australia, and allocated them to receive psychosocial assessment (Adolescent and Young Adult Oncology Psychosocial Assessment Measure) with a clinical psychologist or social worker through face-to-face or telehealth modalities using a partially randomized patient preference model. Patients completed a pre- and postassessment questionnaire comprising validated and purposely designed feasibility and acceptability indices, including the impact of technical difficulties, if patients had their own devices; number of patients who were content with their group allocation; self-reported preference of modality; Treatment Credibility and Expectations Questionnaire; and Working Alliance Inventory. Clinicians also completed a postassessment questionnaire rating their impressions of the acceptability and feasibility of intervention delivery by each modality. Results: Of 29 patients approached, 23 consented to participate (response rate: 79%). Participants were partially randomized to either telehealth (8/23, 35%; mean age 16.50 years, range 15-23 years; females: 4/8, 50%) or face-to-face (11/23, 62%; mean age 17 years, range 15-22 years; females: 8/11, 72%) conditions. Four participants withdrew consent because of logistical or medical complications (attrition rate: 17.4%). Most participants (6/8, 75%) in the telehealth group used their computer or iPad (2 were provided with an iPad), with minor technical difficulties occurring in 3 of 8 (37.5%) assessments. Participants in both groups rated high working alliance (Working Alliance Inventory; median patient response in the telehealth group, 74, range 59-84 and face-to-face group, 63, range 51-84) and reported positive beliefs regarding the credibility and expectations of their treatment group. Postassessment preferences between face-to-face or telehealth modalities varied. Most patients in the telehealth group (5/8, 63%) reported no preference, whereas 6 of 11 (55%) in the face-to-face group reported a preference for the face-to-face modality. Conclusions: Telehealth is acceptable as patient comfort was comparable across modalities, with no significant technological barriers experienced. However, patients varied in their preferred interview modality, highlighting the need to tailor the treatment to patient preference and circumstances. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12614001142628; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366609 (Archived by WebCite at http://www.webcitation.org/721889HpE) UR - http://www.researchprotocols.org/2018/8/e168/ UR - http://dx.doi.org/10.2196/resprot.8886 UR - http://www.ncbi.nlm.nih.gov/pubmed/30158103 ID - info:doi/10.2196/resprot.8886 ER -