TY - JOUR AU - March, A. Christine AU - Naame, Elissa AU - Libman, Ingrid AU - Proulx, N. Chelsea AU - Siminerio, Linda AU - Miller, Elizabeth AU - Lyon, R. Aaron PY - 2025/3/26 TI - School-Partnered Collaborative Care (SPACE) for Pediatric Type 1 Diabetes: Development and Usability Study of a Virtual Intervention With Multisystem Community Partners JO - JMIR Diabetes SP - e64096 VL - 10 KW - type 1 diabetes KW - user-centered design KW - school health KW - collaborative care model KW - implementation research KW - pediatric KW - usability testing KW - virtual intervention KW - multisystem community partners KW - children KW - youth KW - diabetes management support KW - health system partners KW - psychosocial interventions KW - quantitative assessments KW - qualitative assessments N2 - Background: School-partnered interventions may improve health outcomes for children with type 1 diabetes, though there is limited evidence to support their effectiveness and sustainability. Family, school, or health system factors may interfere with intervention usability and implementation. Objective: To identify and address potential implementation barriers during intervention development, we combined methods in user-centered design and implementation science to adapt an evidence-based psychosocial intervention, the collaborative care model, to a virtual school-partnered collaborative care (SPACE) model for type 1 diabetes between schools and diabetes medical teams. Methods: We recruited patient, family, school, and health system partners (n=20) to cocreate SPACE through iterative, web-based design sessions using a digital whiteboard (phase 1). User-centered design methods included independent and group activities for idea generation, visual voting, and structured critique of the evolving SPACE prototype. In phase 2, the prototype was evaluated with the usability evaluation for evidence-based psychosocial interventions methods. School nurses reviewed the prototype and tasks in cognitive walkthroughs and completed the Intervention Usability Scale (IUS). Two members of the research team independently identified and prioritized (1-3 rating) discrete usability concerns. We evaluated the relationship between prioritization and the percentage of nurses reporting each usability issue with Spearman correlation. Differences in IUS scores by school nurse characteristics were assessed with ANOVA. Results: In the design phase, the partners generated over 90 unique ideas for SPACE, prioritizing elements pertaining to intervention adaptability, team-based communication, and multidimensional outcome tracking. Following three iterations of prototype development, cognitive walkthroughs were completed with 10 school nurses (n=10, 100% female; mean age 48.5, SD 9.5 years) representing different districts and years of experience. Nurses identified 16 discrete usability issues (each reported by 10%-60% of participants). Two issues receiving the highest priority (3.0): ability to access a virtual platform (n=3, 30% of participants) and data-sharing mechanisms between nurses and providers (n=6, 60% of participants). There was a moderate correlation between priority rating and the percentage of nurses reporting each issue (?=0.63; P=.01). Average IUS ratings (77.8, SD 11.1; 100-point scale) indicated appropriate usability. There was no difference in IUS ratings by school nurse experience (P=.54), student caseload (P=.12), number of schools covered (P=.90), or prior experience with type 1 diabetes (P=.83), suggesting that other factors may influence usability. The design team recommended strategies for SPACE implementation to overcome high-priority issues, including training users on videoconferencing applications, establishing secure forms for school data reporting, and sharing glucose data in real-time during SPACE meetings. Conclusions: Cross-sector interventions are complex, and perceived usability is a potential barrier to implementation. Using web-based cocreation methods with community partners promoted high-quality intervention design that is aligned with end-user priorities. Quantitative and qualitative assessments indicated appropriate degree of usability to move forward with pilot-testing. UR - https://diabetes.jmir.org/2025/1/e64096 UR - http://dx.doi.org/10.2196/64096 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64096 ER - TY - JOUR AU - Atchison, J. Christina AU - Gilby, Nicholas AU - Pantelidou, Galini AU - Clemens, Sam AU - Pickering, Kevin AU - Chadeau-Hyam, Marc AU - Ashby, Deborah AU - Barclay, S. Wendy AU - Cooke, S. Graham AU - Darzi, Ara AU - Riley, Steven AU - Donnelly, A. Christl AU - Ward, Helen AU - Elliott, Paul PY - 2025/1/9 TI - Strategies to Increase Response Rate and Reduce Nonresponse Bias in Population Health Research: Analysis of a Series of Randomized Controlled Experiments during a Large COVID-19 Study JO - JMIR Public Health Surveill SP - e60022 VL - 11 KW - study recruitment KW - response rate KW - population-based research KW - COVID-19 KW - SARS-CoV-2 KW - web-based questionnaires N2 - Background: High response rates are needed in population-based studies, as nonresponse reduces effective sample size and bias affects accuracy and decreases the generalizability of the study findings. Objective: We tested different strategies to improve response rate and reduce nonresponse bias in a national population?based COVID-19 surveillance program in England, United Kingdom. Methods: Over 19 rounds, a random sample of individuals aged 5 years and older from the general population in England were invited by mail to complete a web-based questionnaire and return a swab for SARS-CoV-2 testing. We carried out several nested randomized controlled experiments to measure the impact on response rates of different interventions, including (1) variations in invitation and reminder letters and SMS text messages and (2) the offer of a conditional monetary incentive to return a swab, reporting absolute changes in response and relative response rate (95% CIs). Results: Monetary incentives increased the response rate (completed swabs returned as a proportion of the number of individuals invited) across all age groups, sex at birth, and area deprivation with the biggest increase among the lowest responders, namely teenagers and young adults and those living in more deprived areas. With no monetary incentive, the response rate was 3.4% in participants aged 18?22 years, increasing to 8.1% with a £10 (US $12.5) incentive, 11.9% with £20 (US $25.0), and 18.2% with £30 (US $37.5) (relative response rate 2.4 [95% CI 2.0-2.9], 3.5 [95% CI 3.0-4.2], and 5.4 [95% CI 4.4-6.7], respectively). Nonmonetary strategies had a modest, if any, impact on response rate. The largest effect was observed for sending an additional swab reminder (SMS text message or email). For example, those receiving an additional SMS text message were more likely to return a completed swab compared to those receiving the standard email-SMS approach, 73.3% versus 70.2%: percentage difference 3.1% (95% CI 2.2%-4.0%). Conclusions: Conditional monetary incentives improved response rates to a web-based survey, which required the return of a swab test, particularly for younger age groups. Used in a selective way, incentives may be an effective strategy for improving sample response and representativeness in population-based studies. UR - https://publichealth.jmir.org/2025/1/e60022 UR - http://dx.doi.org/10.2196/60022 ID - info:doi/10.2196/60022 ER - TY - JOUR AU - Fang, Heping AU - Xian, Ruoling AU - Li, Juan AU - Li, Yingcun AU - Liu, Enmei AU - Zhao, Yan AU - Hu, Yan PY - 2025/1/7 TI - Urban-Suburban Differences in Public Perspectives on Digitalizing Pediatric Research: Cross-Sectional Survey Study JO - J Med Internet Res SP - e60324 VL - 27 KW - pediatrics KW - pediatric research KW - digital health KW - public opinion KW - research KW - patient participation KW - urban KW - rural KW - caregiver attitudes KW - social media KW - mobile phone N2 - Background: Recruiting and retaining participants in pediatric research has always been challenging, particularly in healthy populations and remote areas, leading to selection bias and increased health disparities. In the digital age, medical research has been transformed by digital tools, offering new opportunities to enhance engagement in clinical research. However, public perspectives on digitalizing pediatric research and potential differences between urban and suburban areas remain unclear. Objective: This study aimed to investigate public perspectives on digitalizing pediatric research and compare differences between urban and suburban areas to help diversify participants and address health disparities. Methods: A cross-sectional web-based survey targeting caregivers of kindergarten children (aged 2-7 years) in Chongqing was conducted between June and December 2023. A total of 4231 valid questionnaires were analyzed, with 25.1% (n=1064) of the children residing in urban areas and 74.9% (n=3167) in suburban areas. Descriptive statistics and intergroup comparisons were used for data analysis. Results: Approximately 59.8% (n=2531) of the caregivers had first impressions of pediatric research, with 36.9% (n=1561) being positive and 22.9% (n=970) being negative. A total of 38.3% (n=1621) of caregivers recognized the growing popularity of digital tools, and 36.7% (n=1552) supported their use in pediatric research, but only 25.2% (n=1068) favored online-only research methods. The main concerns regarding the use of software in pediatric research were privacy issues (n=3273, 77.4%) and potential addiction (n=2457, 58.1%). Public accounts of research institutions (n=3400, 80.4%) were the most favored for online recruitment. Telephones (1916/3076, 62.3%) and social media apps (1801/3076, 58.6%) were the most popular for regular contact. Intergroup comparisons revealed that suburban caregivers had more positive first impressions of pediatric research (38.6% vs 32%; P<.001; adjusted odds ratio [aOR] 1.27, 95% CI 1.09-1.47) and faced fewer participation barriers: ?worry about being an experimental subject? (70.9% vs 76.6%; P<.001; aOR 0.79, 95% CI 0.67-0.93), ?pose a risk to children?s health? (58.6% vs 67.8%; P<.001; aOR 0.71, 95% CI 0.61-0.83), ?do not have enough background information? (55.2% vs 61.6%; P<.001; aOR 0.78, 95% CI 0.67-0.89), and ?worry about recommending other products? (48.2% vs 55%; P<.001; aOR 0.78, 95% CI 0.67-0.89). They also showed greater support for online-only research methods (26% vs 22.9%; P=.045; aOR 1.19, 95% CI 1.01-1.41) and greater openness to unofficial online recruitment sources (social media friends: 24.7% vs 18.9%; P<.001; aOR 1.33, 95% CI 1.11-1.59; moments on social media: 15.5% vs 11.1%; P<.001; aOR 1.35, 95% CI 1.09-1.67). Conclusions: In the digital age, enhancing recruitment and retention in pediatric research can be achieved by integrating both official and unofficial social media strategies, implementing a hybrid online-offline follow-up approach, and addressing privacy concerns. UR - https://www.jmir.org/2025/1/e60324 UR - http://dx.doi.org/10.2196/60324 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60324 ER - TY - JOUR AU - Raeside, Rebecca AU - Todd, R. Allyson AU - Barakat, Sarah AU - Rom, Sean AU - Boulet, Stephanie AU - Maguire, Sarah AU - Williams, Kathryn AU - Mihrshahi, Seema AU - Hackett, L. Maree AU - Redfern, Julie AU - Partridge, R. Stephanie AU - PY - 2024/12/16 TI - Recruitment of Adolescents to Virtual Clinical Trials: Recruitment Results From the Health4Me Randomized Controlled Trial JO - JMIR Pediatr Parent SP - e62919 VL - 7 KW - adolescents KW - clinical trial KW - recruitment KW - digital health KW - prevention KW - adolescent health KW - health behavior change KW - health promotion KW - social media N2 - Background: Preventive interventions are needed to provide targeted health support to adolescents to improve health behaviors. Engaging adolescents in preventive interventions remains a challenge, highlighting the need for innovative recruitment strategies. Given adolescents? lives are intertwined with digital technologies, attention should be focused on these avenues for recruitment. The evolving nature of clinical trials, including the emergence of virtual clinical trials, requires new recruitment approaches, which must be evaluated. Objective: This study aimed to examine the effectiveness and cost of various digital recruitment strategies for recruiting adolescents to a virtual clinical trial, evaluate the progression of participants from screening to enrollment, and explore factors associated with nonparticipation. This was conducted using data from the Health4Me Study, a preventive digital health intervention to improve physical activity and nutrition behaviors among adolescents aged 12 to 18 years. Methods: Participants were recruited into the Health4Me Study via social media advertisements on various contemporary platforms, emails to schools, emails to contacts within known networks, and emails to relevant youth organizations. Data were collected from social media advertisements, screening, and recruitment logs. Data analysis included summary and descriptive statistics, as well as chi-square tests to explore factors associated with nonparticipation. Results: From 2369 expressions of interest, 390 (16.4%) participants were enrolled. A total of 19 advertisements were placed on social media, and 385 promotional emails were sent to schools, contacts within known networks, and relevant youth organizations. Social media advertisements reached 408,077 unique accounts. Advertisements mostly reached those living in populous states in Australia (306,489/408,077, 75.11% of unique accounts) and those identifying as female (177,698/408,077, 43.55% of unique accounts). A total of 24.97% (101,907/408,077) of advertisements were delivered to accounts with uncategorized genders. The total cost per participant enrolled was Aus $3.89 (approximately US $2.58). Most participants (1980/2305, 85.90%) found out about this study through Instagram. Differences in screening characteristics between eligible participants who did and did not enroll were found to be statistically significant for gender (P=.02), with fewer males and more individuals reporting their gender as ?other? enrolling than expected by chance alone. The recruitment method also differed (P<.001), with fewer participants enrolling through Instagram and more enrolling through other methods (eg, known networks or word of mouth) than expected by chance alone. Conclusions: This study found that virtual clinical trial recruitment was found to be low-cost, with the potential to increase trial participation. Social media was the most effective recruitment method, reaching all states and territories, including hard-to-reach populations. Future action is needed to explore recruitment methods that are more effective for males and to build trust among adolescents regarding clinical trial recruitment via social media. Trial Registration: Australia New Zealand Clinical Trials Registry ACTRN12622000949785; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=383576&isReview=true UR - https://pediatrics.jmir.org/2024/1/e62919 UR - http://dx.doi.org/10.2196/62919 ID - info:doi/10.2196/62919 ER - TY - JOUR AU - Bouchacourt, Lindsay AU - Smith, Sarah AU - Mackert, Michael AU - Almalki, Shoaa AU - Awad, Germine AU - Barczyk, Amanda AU - Bearman, Kate Sarah AU - Castelli, Darla AU - Champagne, Frances AU - de Barbaro, Kaya AU - Garcia, Shirene AU - Johnson, Karen AU - Kinney, Kerry AU - Lawson, Karla AU - Nagy, Zoltan AU - Quiñones Camacho, Laura AU - Rodríguez, Lourdes AU - Schnyer, David AU - Thomaz, Edison AU - Upshaw, Sean AU - Zhang, Yan PY - 2024/12/5 TI - Strategies to Implement a Community-Based, Longitudinal Cohort Study: The Whole Communities-Whole Health Case Study JO - JMIR Form Res SP - e60368 VL - 8 KW - community-based KW - longitudinal KW - health disparities KW - cohort study KW - case study KW - family health KW - child KW - children KW - families KW - child development KW - mobile phone UR - https://formative.jmir.org/2024/1/e60368 UR - http://dx.doi.org/10.2196/60368 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60368 ER - TY - JOUR AU - Bergh, Eric AU - Rennie, Kimberly AU - Espinoza, Jimmy AU - Johnson, Anthony AU - Papanna, Ramesha PY - 2024/9/11 TI - Use of Web-Based Surveys to Collect Long-Term Pediatric Outcomes in Patients With Twin-Twin Transfusion Syndrome Treated With Fetoscopic Laser Photocoagulation: Observational Study JO - JMIR Pediatr Parent SP - e60039 VL - 7 KW - automation KW - REDCap KW - data collection KW - reporting KW - response rate KW - response rates KW - survey KW - surveys KW - questionnaire KW - questionnaires KW - fetal medicine KW - pediatric outcomes KW - long-term outcomes KW - photocoagulation KW - twin KW - twins KW - blood KW - pregnant KW - pregnancy KW - pediatric KW - pediatrics KW - infant KW - infants KW - infancy KW - baby KW - babies KW - neonate KW - neonates KW - neonatal KW - newborn KW - newborns KW - maternal KW - in utero KW - TTTS KW - fetus KW - fetal KW - twin-twin transfusion syndrome N2 - Background: In the United States, patients with monochorionic diamniotic twins who undergo in utero fetoscopic laser photocoagulation (FLP) for twin-twin transfusion syndrome (TTTS) may travel great distances for care. After delivery, many parents cannot return to study sites for formal pediatric evaluation due to geographic location and cost. Objective: The aim of this study was to collect long-term pediatric outcomes in patients who underwent FLP for TTTS. Methods: We assessed the feasibility of using a web-based survey designed in REDCap (Research Electronic Data Capture; Vanderbilt University) to collect parent-reported outcomes in children treated for TTTS at a single center during 2011?2019. Patients with ?1 neonatal survivor were invited via email to complete 5 possible questionnaires: the child status questionnaire (CSQ); fetal center questionnaire (FCQ); Ages & Stages Questionnaires, Third Edition (ASQ-3); Modified Checklist for Autism in Toddlers, Revised With Follow-Up (M-CHAT-R/F); and thank you questionnaire (TYQ). The R programming language (R Foundation for Statistical Computing) was used to automate survey distribution, scoring, and creation of customized reports. The survey was performed in 2019 and repeated after 12 months in the same study population in 2020. Results: A total of 389 patients in 26 different states and 2 international locations had an email address on file and received an invitation in 2019 to complete the survey (median pediatric age 48.9, IQR 1.0?93.6 months). Among surveyed mothers in 2019, the overall response rate was 37.3% (145/389), and the questionnaire completion rate was 98% (145/148), 87.8% (130/148), 71.1% (81/100), 86.4% (19/22), and 74.3% (110/148) for the CSQ, FCQ, ASQ-3, M-CHAT-R/F, and TYQ, respectively. In 2020, the overall response rate was 57.8% (56/97), and the questionnaire completion rate was 96.4% (54/56), 91.1% (51/56), 86.1% (31/36), 91.7% (11/12), and 80.4% (45/56) for the CSQ, FCQ, ASQ-3, M-CHAT-R/F, and TYQ, respectively. Conclusions: This is the first study to use both REDCap and computer automation to aid in the dissemination, collection, and reporting of surveys to collect long-term pediatric outcomes in the field of fetal medicine. UR - https://pediatrics.jmir.org/2024/1/e60039 UR - http://dx.doi.org/10.2196/60039 ID - info:doi/10.2196/60039 ER - TY - JOUR AU - Vakili, Negar AU - Curran, A. Janet AU - Walls, Roisin AU - Phillips, Debbie AU - Miller, Alanna AU - Cassidy, Christine AU - Wozney, Lori PY - 2024/8/27 TI - Preferences for Text Messaging Supports During Youth Transition to Adult Mental Health Services: Theory-Informed Modified e-Delphi Study JO - JMIR Form Res SP - e51690 VL - 8 KW - patient satisfaction KW - satisfaction KW - cross-sectional KW - survey KW - surveys KW - engagement KW - usage KW - technology use KW - transitional KW - transition KW - coordinated care KW - service KW - services KW - feature KW - features KW - need KW - needs KW - transitional care KW - information science KW - human-computer interaction KW - health behavior KW - text-messaging KW - messaging KW - text messages KW - text message KW - SMS KW - mental health KW - persuasive system design KW - youth KW - adolescent KW - adolescents KW - teen KW - teens KW - teenager KW - teenagers N2 - Background: For many young people, the transition from child to adult mental health services is a vulnerable time associated with treatment disengagement and illness progression. Providing service information and options to youth, appealing to them, and tailoring to their needs during this period could help overcome systematic barriers to a successful transition. We know little about how SMS text message?based interventions might be leveraged to support the motivational, informational, and behavioral needs of youth during this time. Ascertaining youth preferences for the content and functionality of an SMS text message service could inform prototype development. Objective: This study investigated consensus preferences among youth on important content, technology features, and engagement supports to inform a transition-focused SMS text message service. Methods: A modified e-Delphi survey design was used to collect demographics, current levels of technology use, importance ratings on message content, preferred technical features, and barriers and enablers to engagement for youth in Canada aged 16-26 years who have accessed mental health services within the past 5 years. Survey items on content were categorized according to the information-motivation-behavioral skills (IMB) model. Survey items on technical features were categorized according to the persuasive system design (PSD) model. A predefined consensus rating matrix and descriptive statistics were used to characterize the sample. The high consensus threshold was 70%. Results: A total of 100 participants, predominantly non-White (n=47, 47%), aged 20-26 years (n=59, 59%), and who had first accessed mental health services between the ages of 13 and 19 years (n=60, 60%), were selected. The majority (n=90, 90%) identified as daily SMS text message users. A high level of consensus on importance ratings was reported in 45% (9/20) of content items based on the IMB model. There were higher levels of consensus on importance ratings related to behavior domain items (3/3, 100%) than information domain items (4/9, 44%) or motivation domain items (2/8, 25%). A high level of consensus on importance ratings was reported in only 19% (4/21) of feature and functionality items based on the PSD model. Among PSD model categories, there was a high level of consensus on importance ratings in 8% (1/12) of the primary task support domain items and 100% (3/3) of the system credibility support domain items. None of the dialogue-support and social-support domain items met the high level of consensus thresholds. In total, 27% (27/100) of youth indicated that the most significant enabler for engaging with a transition-focused SMS text message intervention was the personalization of text messages. Conclusions: Scientists developing next-generation SMS text messaging interventions for this population need to consider how levels of consensus on different features may impact feasibility and personalization efforts. Youth can (and should) play an integral role in the development of these interventions. UR - https://formative.jmir.org/2024/1/e51690 UR - http://dx.doi.org/10.2196/51690 UR - http://www.ncbi.nlm.nih.gov/pubmed/39190437 ID - info:doi/10.2196/51690 ER - TY - JOUR AU - Hu, Sisi AU - Kirkpatrick, E. Ciera AU - Lee, Namyeon AU - Hong, Yoorim AU - Lee, Sungkyoung AU - Hinnant, Amanda PY - 2024/8/15 TI - Using Short-Form Videos to Get Clinical Trial Newcomers to Sign Up: Message-Testing Experiment JO - J Med Internet Res SP - e49600 VL - 26 KW - clinical trial recruitment KW - TikTok KW - source credibility KW - framing KW - psychological barriers KW - logistical barriers KW - integrated behavioral model KW - short-form videos KW - social media use KW - clinical trial KW - recruitment N2 - Background: Recruiting participants for clinical trials poses challenges. Major barriers to participation include psychological factors (eg, fear and mistrust) and logistical constraints (eg, transportation, cost, and scheduling). The strategic design of clinical trial messaging can help overcome these barriers. While strategic communication can be done through various channels (eg, recruitment advertisements), health care providers on the internet have been found to be key sources for communicating clinical trial information to US adults in the social media era. Objective: This study aims to examine how communication source (ie, medical doctors and peers) and message framing of TikTok videos (ie, psychological and logistical framing) influence clinical trial?related attitudes, perceptions, and sign-up behaviors under the guidance of the integrated behavioral model. Methods: This study used a 2 (source: doctor vs peer) × 2 (framing: psychological vs logistical) between-participant factorial design web-based experiment targeting adults in the United States who had never participated in clinical trials (ie, newcomers). A Qualtrics panel was used to recruit and compensate the study respondents (n=561). Participants viewed short-form videos with doctors or peers, using psychological or logistical framing. The main outcome measures included perceived source credibility, self-efficacy, attitude toward clinical trial participation, behavioral intention, and sign-up behavior. Structural equation modeling was used to analyze the direct and indirect effects of message factors on the outcome variables. Source (doctor=1; peer=0) and framing (psychological=1; logistical=0) were dummy-coded. Results: Doctor-featured messages led to greater perceived source credibility (?=.31, P<.001), leading to greater self-efficacy (95% CI 0.13-0.30), which in turn enhanced behavioral intention (95% CI 0.12-0.29) and clinical trial sign-up behavior (95% CI 0.02-0.04). Logistical barrier?framed messages led to greater self-efficacy (?=?.09, P=.02), resulting in higher intention to participate in clinical trials (95% CI ?0.38 to ?0.03) and improved sign-up behavior (95% CI ?0.06 to ?0.004). Logistical barrier?framed messages were also directly associated with an increased likelihood of signing up for a clinical trial (?=?.08, P=.03). The model accounted for 21% of the variance in clinical trial sign-up behavior. Attitude did not significantly affect behavioral intention in this study (?=.08, P=.14), and psychological and logistical barrier?framed messages did not significantly differ in attitudes toward clinical trial participation (?=?.04, P=.09). Conclusions: These findings advance our understanding of how people process popular message characteristics in short-form videos and lend practical guidance for communicators. We encourage medical professionals to consider short-form video sites (eg, TikTok and Instagram Reels) as effective tools for discussing clinical trials and participation opportunities. Specifically, featuring doctors discussing efforts to reduce logistical barriers is recommended. Our measuring of actual behavior as an outcome is a rare and noteworthy contribution to this research. UR - https://www.jmir.org/2024/1/e49600 UR - http://dx.doi.org/10.2196/49600 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/49600 ER - TY - JOUR AU - Jostrup, Erica AU - Nyström, Marcus AU - Tallberg, Pia AU - Söderlund, Göran AU - Gustafsson, Peik AU - Claesdotter-Knutsson, Emma PY - 2024/8/15 TI - Effects of Auditory and Visual White Noise on Oculomotor Inhibition in Children With Attention-Deficit/Hyperactivity Disorder: Protocol for a Crossover Study JO - JMIR Res Protoc SP - e56388 VL - 13 KW - white noise KW - attention-deficit/hyperactivity disorder KW - eye tracking KW - cognitive performance KW - auditory KW - visual KW - oculomotor KW - child KW - children KW - protocol KW - crossover study KW - impairment KW - impairments KW - psychiatric disorders KW - cross modal KW - sensory stimulation KW - eye movement KW - noise N2 - Background: In attention-deficit/hyperactivity disorder (ADHD), poor inhibitory control is one of the main characteristics, with oculomotor inhibition impairments being considered a potential biomarker of the disorder. While auditory white noise has demonstrated the ability to enhance working memory in this group, visual white noise is still unexplored and so are the effects of both types of white noise stimulation on oculomotor inhibition. Objective: This crossover study aims to explore the impact of auditory and visual white noise on oculomotor inhibition in children with ADHD and typically developing (TD) children. The study will investigate the impact of different noise levels (25% and 50% visual, 78 dB auditory), and performance will be evaluated both with and without noise stimulation. We hypothesize that exposure to white noise will improve performance in children with ADHD and impair the performance for TD children. Methods: Memory-guided saccades and prolonged fixations, known for their sensitivity in detecting oculomotor disinhibition in ADHD, will be used to assess performance. Children diagnosed with ADHD, withdrawing from medication for 24 hours, and TD children without psychiatric disorders were recruited for the study. Results: Data collection was initiated in October 2023 and ended in February 2024. A total of 97 participants were enrolled, and the first results are expected between September and November 2024. Conclusions: This study will examine whether cross-modal sensory stimulation can enhance executive function, specifically eye movement control, in children with ADHD. In addition, the study will explore potential differences between auditory and visual noise effects in both groups. Our goal is to identify implications for understanding how noise can be used to improve cognitive performance. Trial Registration: ClinicalTrials.gov NCT06057441; https://clinicaltrials.gov/study/NCT06057441 International Registered Report Identifier (IRRID): DERR1-10.2196/56388 UR - https://www.researchprotocols.org/2024/1/e56388 UR - http://dx.doi.org/10.2196/56388 UR - http://www.ncbi.nlm.nih.gov/pubmed/39146010 ID - info:doi/10.2196/56388 ER - TY - JOUR AU - Yan, Yiwei AU - Xing, Congyan AU - Chen, Jian AU - Zheng, Yingbin AU - Li, Xiaobin AU - Liu, Yirong AU - Wang, Zhanxiang AU - Gong, Kai PY - 2024/3/25 TI - Provincial Maternal and Child Information System in Inner Mongolia, China: Descriptive Implementation Study JO - JMIR Pediatr Parent SP - e46813 VL - 7 KW - information system KW - maternal and child health care KW - system construction KW - system implementation KW - regional health KW - Inner Mongolia Autonomous Region N2 - Background: After the implementation of 2- and 3-child policies, the rising proportion of high-age and high-risk pregnancies put enormous pressure on maternal and child health (MCH) services for China. This populous nation with an increasing population flow imperatively required the support of large-scale information systems for management. Municipal MCH information systems were commonly applied in developed cities of eastern provinces in China. However, implementation of provincial MCH information systems in relatively low-income areas is lacking. In 2020, the implementation of a regional maternal and child information system (RMCIS) in Inner Mongolia filled this gap. Objective: This paper aimed to demonstrate the construction process and evaluate the implementation effect of an RMCIS in improving the regional MCH in Inner Mongolia. Methods: We conducted a descriptive study for the implementation of an RMCIS in Inner Mongolia. Based on the role analysis and information reporting process, the system architecture design had 10 modules, supporting basic health care services, special case management, health support, and administration and supervision. Five-color management was applied for pregnancy risk stratification. We collected data on the construction cost, key characteristics of patients, and use count of the main services from January 1, 2020, to October 31, 2022, in Inner Mongolia. Descriptive analysis was used to demonstrate the implementation effects of the RMCIS. Results: The construction and implementation of the RMCIS cost CNY 8 million (US $1.1 million), with a duration of 13 months. Between 2020 and 2022, the system recorded 221,772 registered pregnant women, with a 44.75% early pregnancy registry rate and 147,264 newborns, covering 278 hospitals and 225 community health care centers in 12 cities. Five-color management of high-risk pregnancies resulted in 76,975 (45.45%) pregnancies stratified as yellow (general risk), 36,627 (21.63%) as orange (relatively high risk), 156 (0.09%) as red (high risk), and 3888 (2.30%) as purple (infectious disease). A scarred uterus (n=28,159, 36.58%), BMI?28 (n=14,164, 38.67%), aggressive placenta praevia (n=32, 20.51%), and viral hepatitis (n=1787, 45.96%) were the top factors of high-risk pregnancies (yellow, orange, red, and purple). In addition, 132,079 pregnancies, including 65,018 (49.23%) high-risk pregnancies, were registered in 2022 compared to 32,466 pregnancies, including 21,849 (67.30%) high-risk pregnancies, registered in 2020. Conclusions: The implementation of an RMCIS in Inner Mongolia achieved the provincial MCH data interconnection for basic services and obtained both social and economic benefits, which could provide valuable experience to medical administration departments, practitioners, and medical informatics constructors worldwide. UR - https://pediatrics.jmir.org/2024/1/e46813 UR - http://dx.doi.org/10.2196/46813 UR - http://www.ncbi.nlm.nih.gov/pubmed/38526553 ID - info:doi/10.2196/46813 ER - TY - JOUR AU - Bhargava, Hansa AU - Salomon, Carmela AU - Suresh, Srinivasan AU - Chang, Anthony AU - Kilian, Rachel AU - Stijn, van Diana AU - Oriol, Albert AU - Low, Daniel AU - Knebel, Ashley AU - Taraman, Sharief PY - 2024/2/29 TI - Promises, Pitfalls, and Clinical Applications of Artificial Intelligence in Pediatrics JO - J Med Internet Res SP - e49022 VL - 26 KW - artificial intelligence KW - pediatrics KW - autism spectrum disorder KW - ASD KW - disparities KW - pediatric KW - youth KW - child KW - children KW - autism KW - autistic KW - barrier KW - barriers KW - clinical application KW - clinical applications KW - professional development KW - continuing education KW - continuing medical education KW - CME KW - implementation UR - https://www.jmir.org/2024/1/e49022 UR - http://dx.doi.org/10.2196/49022 UR - http://www.ncbi.nlm.nih.gov/pubmed/38421690 ID - info:doi/10.2196/49022 ER - TY - JOUR AU - Rech, Till AU - Rubarth, Kerstin AU - Bührer, Christoph AU - Balzer, Felix AU - Dame, Christof PY - 2024/2/28 TI - The Finnegan Score for Neonatal Opioid Withdrawal Revisited With Routine Electronic Data: Retrospective Study JO - JMIR Pediatr Parent SP - e50575 VL - 7 KW - data science application KW - neonatology KW - Finnegan score KW - neonatal opioid withdrawal syndrome KW - mixed models KW - neonate KW - neonatal KW - abstinence KW - opioid KW - withdrawal KW - substance abuse KW - postnatal KW - pediatrics KW - electronic health record KW - EHR KW - monitoring KW - health record KW - finnegan KW - neonatal abstinence syndrome KW - NAS KW - opioid withdrawal N2 - Background: The severity of neonatal abstinence syndrome (NAS) may be assessed with the Finnegan score (FS). Since the FS is laborious and subjective, alternative ways of assessment may improve quality of care. Objective: In this pilot study, we examined associations between the FS and routine monitoring data obtained from the electronic health record system. Methods: The study included 205 neonates with NAS after intrauterine (n=23) or postnatal opioid exposure (n=182). Routine monitoring data were analyzed at 60±10 minutes (t?1) and 120±10 minutes (t?2) before each FS assessment. Within each time period, the mean for each variable was calculated. Readings were also normalized to individual baseline data for each patient and parameter. Mixed effects models were used to assess the effect of different variables. Results: Plots of vital parameters against the FS showed heavily scattered data. When controlling for several variables, the best-performing mixed effects model displayed significant effects of individual baseline-controlled mean heart rate (estimate 0.04, 95% CI 0.02?0.07) and arterial blood pressure (estimate 0.05, 95% CI 0.01?0.08) at t?1 with a goodness of fit (R2m) of 0.11. Conclusions: Routine electronic data can be extracted and analyzed for their correlation with FS data. Mixed effects models show small but significant effects after normalizing vital parameters to individual baselines. UR - https://pediatrics.jmir.org/2024/1/e50575 UR - http://dx.doi.org/10.2196/50575 ID - info:doi/10.2196/50575 ER - TY - JOUR AU - Weitzman, R. Elissa AU - Minegishi, Machiko AU - Cox, Rachele AU - Wisk, E. Lauren PY - 2023/12/6 TI - Associations Between Patient-Reported Outcome Measures of Physical and Psychological Functioning and Willingness to Share Social Media Data for Research Among Adolescents With a Chronic Rheumatic Disease: Cross-Sectional Survey JO - JMIR Pediatr Parent SP - e46555 VL - 6 KW - patient-reported outcomes KW - PROM KW - outcome measure KW - outcome measures KW - patient reported KW - patient data KW - social media KW - sharing KW - personally generated data KW - chronic illness KW - quality of life KW - rheumatic disease KW - rheumatic KW - rheumatoid KW - adolescent KW - adolescents KW - youth KW - research involvement KW - privacy KW - confidentiality KW - confidential KW - personal N2 - Background: Social media data may augment understanding of the disease and treatment experiences and quality of life of youth with chronic medical conditions. Little is known about the willingness to share social media data for health research among youth with chronic medical conditions and the differences in health status between sharing and nonsharing youth with chronic medical conditions. Objective: We aimed to evaluate the associations between patient-reported measures of disease symptoms and functioning and the willingness to share social media data. Methods: Between February 2018 and August 2019, during routine clinic visits, survey data about social media use and the willingness to share social media data (dependent variable) were collected from adolescents in a national rheumatic disease registry. Survey data were analyzed with patient-reported measures of disease symptoms and functioning and a clinical measure of disease activity, which were collected through a parent study. We used descriptive statistics and multivariate logistic regression to compare patient-reported outcomes between youth with chronic medical conditions who opted to share social media data and those who did not opt to share such data. Results: Among 112 youths, (age: mean 16.1, SD 1.6 y; female: n=72, 64.3%), 83 (74.1%) agreed to share social media data. Female participants were more likely to share (P=.04). In all, 49 (43.8%) and 28 (25%) participants viewed and posted about rheumatic disease, respectively. Compared to nonsharers, sharers reported lower mobility (T-score: mean 49.0, SD 9.4 vs mean 53.9, SD 8.9; P=.02) and more pain interference (T-score: mean 45.7, SD 8.8 vs mean 40.4, SD 8.0; P=.005), fatigue (T-score: mean 49.1, SD 11.0 vs mean 39.7, SD 9.7; P<.001), depression (T-score: mean 48.1, SD 8.9 vs mean 42.2, SD 8.4; P=.003), and anxiety (T-score: mean 45.2, SD 9.3 vs mean 38.5, SD 7.0; P<.001). In regression analyses adjusted for age, sex, study site, and Physician Global Assessment score, each 1-unit increase in symptoms was associated with greater odds of willingness to share social media data, for measures of pain interference (Adjusted Odds Ratio [AOR] 1.07, 95% CI 1.001-1.14), fatigue (AOR 1.08, 95% CI 1.03-1.13), depression (AOR 1.07, 95% CI 1.01-1.13), and anxiety (AOR 1.10, 95% CI 1.03-1.18). Conclusions: High percentages of youth with rheumatic diseases used and were willing to share their social media data for research. Sharers reported worse symptoms and functioning compared to those of nonsharers. Social media may offer a potent information source and engagement pathway for youth with rheumatic diseases, but differences between sharing and nonsharing youth merit consideration when designing studies and evaluating social media?derived findings. UR - https://pediatrics.jmir.org/2023/1/e46555 UR - http://dx.doi.org/10.2196/46555 ID - info:doi/10.2196/46555 ER - TY - JOUR AU - Van Dooren, Martijn AU - De Croon, Robin AU - Swillen, Ann AU - Verbert, Katrien PY - 2023/8/16 TI - Bridging the Communication Gap Between People With Cognitive Impairments and Their Caregivers Using mHealth Apps: User-Centered Design and Evaluation Study With People With 22q11 Deletion Syndrome JO - JMIR Hum Factors SP - e44290 VL - 10 KW - 22q11 deletion syndrome KW - 22q11 DS KW - cognitive impairments KW - communication gap KW - mHealth N2 - Background: In families with children with cognitive impairments, both parents and children experience tension and have questions because of a lack of communication and adequate information. Therefore, there is a great need to develop tools that can help bridge the communication gap between patients and caregivers by stimulating conversations and providing psychoeducational tools. mHealth apps show great potential in this context. Objective: The objective of this research is to discover the specific ways young people with cognitive impairments and their families interact with mHealth apps in the context of bridging the communication gap. This newly discovered information leads to potentially more impactful mHealth interventions in the future. Therefore, this paper documents the design and development of a mHealth app for a specific group of people with cognitive impairments?people with 22q11 deletion syndrome (22q11 DS)?and their caregivers, as well as key learnings from the evaluation of this app. Methods: An iterative, user-centered design approach is used to design and develop the app. Design and evaluation happens in 2 phases. During the design phase, feedback is gathered from 2 medical experts and 3 human computer interaction (HCI) experts using a low-fidelity paper prototype. During the evaluation phase, feedback is gathered from 8 families with a child with 22q11 DS using a fully working proof of concept. This phase consists of a semistructured interview, a 2-4?week trial period, and a concluding semistructured interview. Results: The evaluation results of the fully working proof of concept led to design recommendations related to four different topics: (1) overcoming usage barriers, (2) stimulating conversation through a mHealth app, (3) providing information, and (4) bringing continual added value. Results are presented according to six different categories obtained in a thematic analysis: (1) feedback about the app ?as is,? (2) difficulties, (3) comparison between physical and digital tool, (4) extensions, (5) intention, and (6) other. Conclusions: In this research, the need for apps that help bridge the communication gap between a person with cognitive impairment and their caregiver is confirmed. All participating families express their gratitude and mention the added value for other families. Therefore, it is highly encouraged for clinics and institutions to take action and develop an app to be used in practice. Furthermore, considerations when developing for people with 22q11 DS, or more broadly, people with cognitive impairments, are proposed. First, one should keep design principles in mind to overcome usage barriers. Next, recognition is a key concept when stimulating conversations through mobile apps. Third, information should be provided by a trusted source, and more than just clinical information can be considered valuable. Finally, having the possibility of using a digital tool that can be personalized brings continual added value. UR - https://humanfactors.jmir.org/2023/1/e44290 UR - http://dx.doi.org/10.2196/44290 UR - http://www.ncbi.nlm.nih.gov/pubmed/37585257 ID - info:doi/10.2196/44290 ER - TY - JOUR AU - Massa, Paula AU - de Souza Ferraz, Aurélia Dulce AU - Magno, Laio AU - Silva, Paula Ana AU - Greco, Marília AU - Dourado, Inês AU - Grangeiro, Alexandre PY - 2023/6/23 TI - A Transgender Chatbot (Amanda Selfie) to Create Pre-exposure Prophylaxis Demand Among Adolescents in Brazil: Assessment of Acceptability, Functionality, Usability, and Results JO - J Med Internet Res SP - e41881 VL - 25 KW - artificial intelligence KW - adolescent KW - HIV pre-exposure prophylaxis KW - transgender women KW - men who have sex with men KW - chatbot KW - PrEP KW - transgender KW - HIV KW - prevention KW - prophylaxis KW - acceptability N2 - Background: HIV incidence rates have increased in adolescent men who have sex with men (AMSM) and adolescent transgender women (ATGW). Thus, it is essential to promote access to HIV prevention, including pre-exposure prophylaxis (PrEP), among these groups. Moreover, using artificial intelligence and online social platforms to create demand and access to health care services are essential tools for adolescents and youth. Objective: This study aims to describe the participative process of developing a chatbot using artificial intelligence to create demand for PrEP use among AMSM and ATGW in Brazil. Furthermore, it analyzes the chatbot?s acceptability, functionality, and usability and its results on the demand creation for PrEP. Methods: The chatbot Amanda Selfie integrates the demand creation strategies based on social networks (DCSSNs) of the PrEP1519 study. She was conceived as a Black transgender woman and to function as a virtual peer educator. The development process occurred in 3 phases (conception, trial, and final version) and lasted 21 months. A mixed methodology was used for the evaluations. Qualitative approaches, such as in-depth adolescent interviews, were used to analyze acceptability and usability, while quantitative methods were used to analyze the functionality and result of the demand creation for PrEP based on interactions with Amanda and information from health care services about using PrEP. To evaluate Amanda?s result on the demand creation for PrEP, we analyzed sociodemographic profiles of adolescents who interacted at least once with her and developed a cascade model containing the number of people at various stages between the first interaction and initiation of PrEP (PrEP uptake). These indicators were compared with other DCSs developed in the PrEP1519 study using chi-square tests and residual analysis (P=.05). Results: Amanda Selfie was well accepted as a peer educator, clearly and objectively communicating on topics such as gender identity, sexual experiences, HIV, and PrEP. The chatbot proved appropriate for answering questions in an agile and confidential manner, using the language used by AMSM and ATGW and with a greater sense of security and less judgment. The interactions with Amanda Selfie combined with a health professional were well evaluated and improved the appointment scheduling. The chatbot interacted with most people (757/1239, 61.1%) reached by the DCSSNs. However, when compared with the other DCSSNs, Amanda was not efficient in identifying AMSM/ATGW (359/482, 74.5% vs 130/757, 17.2% of total interactions, respectively) and in PrEP uptake (90/359, 25.1% vs 19/130, 14.6%). The following profiles were associated (P<.001) with Amanda Selfie?s demand creation, when compared with other DCS: ATGW and adolescents with higher levels of schooling and White skin color. Conclusions: Using a chatbot to create PrEP demand among AMSM and ATGW was well accepted, especially for ATGW with higher levels of schooling. A complimentary dialog with a health professional increased PrEP uptake, although it remained lower than the results of the other DCSSNs. UR - https://www.jmir.org/2023/1/e41881 UR - http://dx.doi.org/10.2196/41881 UR - http://www.ncbi.nlm.nih.gov/pubmed/37351920 ID - info:doi/10.2196/41881 ER - TY - JOUR AU - Moreno, P. Jennette AU - Dadabhoy, Hafza AU - Musaad, Salma AU - Baranowski, Tom AU - Thompson, Debbe AU - Alfano, A. Candice AU - Crowley, J. Stephanie PY - 2022/5/16 TI - Evaluation of a Circadian Rhythm and Sleep-Focused Mobile Health Intervention for the Prevention of Accelerated Summer Weight Gain Among Elementary School?Age Children: Protocol for a Randomized Controlled Feasibility Study JO - JMIR Res Protoc SP - e37002 VL - 11 IS - 5 KW - summer KW - circadian rhythms KW - sleep KW - child obesity KW - elementary school N2 - Background: The i?rhythm project is a mobile health adaptation of interpersonal and social rhythm therapy designed to promote healthy sleep and behavioral rhythms among 5-8-year olds during summer for the prevention of accelerated summer weight gain. Objective: This pilot study will examine the feasibility, acceptability, and preliminary efficacy of the i?rhythm intervention. This will ensure that the research protocol and procedures work as desired and are acceptable to families in preparation for the fully powered randomized controlled trial. The proposed study will examine the willingness of participants to participate in the intervention and determine whether modifications to the intervention, procedures, and measures are needed before conducting a fully powered study. We will assess our ability to (1) recruit, consent, and retain participants; (2) deliver the intervention; (3) implement the study and assessment procedures; (4) assess the reliability of the proposed measures; and (5) assess the acceptability of the intervention and assessment protocol. Methods: This study will employ a single-blinded 2-group randomized control design (treatment and no-treatment control) with randomization occurring after baseline (Time 0) and 3 additional evaluation periods (postintervention [Time 1], and 9 months [Time 2] and 12 months after intervention [Time 3]). A sample of 40 parent-child dyads will be recruited. Results: This study was approved by the institutional review board of Baylor College of Medicine (H-47369). Recruitment began in March 2021. As of March 2022, data collection and recruitment are ongoing. Conclusions: This study will address the role of sleep and circadian rhythms in the prevention of accelerated summer weight gain and assess the intervention?s effects on the long-term prevention of child obesity. Trial Registration: ClinicalTrials.gov NCT04445740; https://clinicaltrials.gov/ct2/show/NCT04445740. International Registered Report Identifier (IRRID): DERR1-10.2196/37002 UR - https://www.researchprotocols.org/2022/5/e37002 UR - http://dx.doi.org/10.2196/37002 UR - http://www.ncbi.nlm.nih.gov/pubmed/35576573 ID - info:doi/10.2196/37002 ER - TY - JOUR AU - Barnes, Courtney AU - Yoong, Lin Sze AU - Nathan, Nicole AU - Wolfenden, Luke AU - Wedesweiler, Taya AU - Kerr, Jayde AU - Ward, S. Dianne AU - Grady, Alice PY - 2021/12/15 TI - Feasibility of a Web-Based Implementation Intervention to Improve Child Dietary Intake in Early Childhood Education and Care: Pilot Randomized Controlled Trial JO - J Med Internet Res SP - e25902 VL - 23 IS - 12 KW - childcare center KW - web-based KW - nutrition KW - healthy eating KW - randomized controlled trial KW - intervention KW - implementation N2 - Background: Internationally, the implementation of evidence-based healthy eating policies and practices within early childhood education and care (ECEC) settings that encourage children?s healthy diet is recommended. Despite the existence of evidence-based healthy eating practices, research indicates that current implementation rates are inadequate. Web-based approaches provide a potentially effective and less costly approach to support ECEC staff with implementing nutrition policies and practices. Objective: The broad aim of this pilot randomized controlled trial is to assess the feasibility of assessing the impact of a web-based program together with health promotion officer (HPO) support on ECEC center implementation of healthy eating policies and practices. Specifically, we seek to describe the completion rate of study evaluation processes (participant consent and data collection rates); examine ECEC center uptake, acceptability, and appropriateness of the intervention and implementation strategies; understand the potential cost of delivering and receiving implementation support strategies; and describe the potential impact of the web-based intervention on the implementation of targeted healthy eating practices among centers in the intervention group. Methods: A 6-month pilot implementation trial using a cluster-randomized controlled trial design was conducted in 22 ECEC centers within the Hunter New England region of New South Wales, Australia. Potentially eligible centers were distributed a recruitment package and telephoned by the research team to assess eligibility and obtain consent. Centers randomly allocated to the intervention group received access to a web-based program, together with HPO support (eg, educational outreach visit and local technical assistance) to implement 5 healthy eating practices. The web-based program incorporated audit with feedback, development of formal implementation blueprints, and educational materials to facilitate improvement in implementation. The centers allocated to the control group received the usual care. Results: Of the 57 centers approached for the study, 22 (47%) provided consent to participate. Data collection components were completed by 100% (22/22) of the centers. High uptake for implementation strategies provided by HPOs (10/11, 91% to 11/11, 100%) and the web-based program (11/11, 100%) was observed. At follow-up, intervention centers had logged on to the program at an average of 5.18 (SD 2.52) times. The web-based program and implementation support strategies were highly acceptable (10/11, 91% to 11/11, 100%). Implementation of 4 healthy eating practices improved in the intervention group, ranging from 19% (2/11) to 64% (7/11). Conclusions: This study provides promising pilot data to warrant the conduct of a fully powered implementation trial to assess the impact of the program on ECEC healthy eating practice implementation. Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12619001158156; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378099 International Registered Report Identifier (IRRID): RR2-10.1186/s40814-020-00707-w UR - https://www.jmir.org/2021/12/e25902 UR - http://dx.doi.org/10.2196/25902 UR - http://www.ncbi.nlm.nih.gov/pubmed/34914617 ID - info:doi/10.2196/25902 ER - TY - JOUR AU - Newton, S. Amanda AU - March, Sonja AU - Gehring, D. Nicole AU - Rowe, K. Arlen AU - Radomski, D. Ashley PY - 2021/12/2 TI - Establishing a Working Definition of User Experience for eHealth Interventions of Self-reported User Experience Measures With eHealth Researchers and Adolescents: Scoping Review JO - J Med Internet Res SP - e25012 VL - 23 IS - 12 KW - eHealth KW - internet KW - design KW - development KW - user experience KW - health care KW - scoping review KW - Delphi N2 - Background: Across eHealth intervention studies involving children, adolescents, and their parents, researchers have measured user experience to assist with intervention development, refinement, and evaluation. To date, no widely accepted definitions or measures of user experience exist to support a standardized approach for evaluation and comparison within or across interventions. Objective: We conduct a scoping review with subsequent Delphi consultation to identify how user experience is defined and measured in eHealth research studies, characterize the measurement tools used, and establish working definitions for domains of user experience that could be used in future eHealth evaluations. Methods: We systematically searched electronic databases for published and gray literature available from January 1, 2005, to April 11, 2019. We included studies assessing an eHealth intervention that targeted any health condition and was designed for use by children, adolescents, and their parents. eHealth interventions needed to be web-, computer-, or mobile-based, mediated by the internet with some degree of interactivity. We required studies to report the measurement of user experience as first-person experiences, involving cognitive and behavioral factors reported by intervention users. We appraised the quality of user experience measures in included studies using published criteria: well-established, approaching well-established, promising, or not yet established. We conducted a descriptive analysis of how user experience was defined and measured in each study. Review findings subsequently informed the survey questions used in the Delphi consultations with eHealth researchers and adolescent users for how user experience should be defined and measured. Results: Of the 8634 articles screened for eligibility, 129 articles and 1 erratum were included in the review. A total of 30 eHealth researchers and 27 adolescents participated in the Delphi consultations. On the basis of the literature and consultations, we proposed working definitions for 6 main user experience domains: acceptability, satisfaction, credibility, usability, user-reported adherence, and perceived impact. Although most studies incorporated a study-specific measure, we identified 10 well-established measures to quantify 5 of the 6 domains of user experience (all except for self-reported adherence). Our adolescent and researcher participants ranked perceived impact as one of the most important domains of user experience and usability as one of the least important domains. Rankings between adolescents and researchers diverged for other domains. Conclusions: Findings highlight the various ways in which user experience has been defined and measured across studies and what aspects are most valued by researchers and adolescent users. We propose incorporating the working definitions and available measures of user experience to support consistent evaluation and reporting of outcomes across studies. Future studies can refine the definitions and measurement of user experience, explore how user experience relates to other eHealth outcomes, and inform the design and use of human-centered eHealth interventions. UR - https://www.jmir.org/2021/12/e25012 UR - http://dx.doi.org/10.2196/25012 UR - http://www.ncbi.nlm.nih.gov/pubmed/34860671 ID - info:doi/10.2196/25012 ER - TY - JOUR AU - Parker, N. Jayelin AU - Hunter, S. Alexis AU - Bauermeister, A. Jose AU - Bonar, E. Erin AU - Carrico, Adam AU - Stephenson, Rob PY - 2021/12/1 TI - Comparing Social Media and In-Person Recruitment: Lessons Learned From Recruiting Substance-Using, Sexual and Gender Minority Adolescents and Young Adults for a Randomized Control Trial JO - JMIR Public Health Surveill SP - e31657 VL - 7 IS - 12 KW - HIV testing KW - substance use KW - recruitment KW - sexual and gender minorities KW - youth N2 - Background: Recruiting large samples of diverse sexual and gender minority adolescent and young adults (AYAs) into HIV intervention research is critical to the development and later dissemination of interventions that address the risk factors for HIV transmission among substance-using, sexual and gender minority AYAs. Objective: This paper aimed to describe the characteristics of the samples recruited via social media and in-person methods and makes recommendations for strategies to recruit substance-using, sexual and gender minority AYAs, a hardly reached population that is a priority for HIV prevention research. Methods: Using data from a randomized control trial of an HIV and substance use intervention with sexual and gender minority AYAs, aged 15 to 29 years in southeastern Michigan (n=414), we examined demographic and behavioral characteristics associated with successful recruitment from a range of virtual and physical venues. Results: We found that paid advertisements on Facebook, Instagram, and Grindr offered the largest quantity of eligible participants willing to enroll in the trial. Instagram offered the largest proportion of transgender masculine participants, and Grindr offered the largest proportion of Black/African American individuals. Although we attempted venue-based recruitment at clubs, bars, community centers, and AIDS service organizations, we found it to be unsuccessful for this specific hardly reached population. Social media and geobased dating applications offered the largest pool of eligible participants. Conclusions: Understanding factors associated with successful recruitment has the potential to inform effective and efficient strategies for HIV prevention research with substance-using, sexual and gender AYAs. Trial Registration: ClinicalTrials.gov NCT02945436; https://clinicaltrials.gov/ct2/show/NCT02945436 International Registered Report Identifier (IRRID): RR2-10.2196/resprot.9414 UR - https://publichealth.jmir.org/2021/12/e31657 UR - http://dx.doi.org/10.2196/31657 UR - http://www.ncbi.nlm.nih.gov/pubmed/34855613 ID - info:doi/10.2196/31657 ER - TY - JOUR AU - Gilkey, B. Melissa AU - Kong, Yi Wei AU - Huang, Qian AU - Grabert, K. Brigid AU - Thompson, Peyton AU - Brewer, T. Noel PY - 2021/9/10 TI - Using Telehealth to Deliver Primary Care to Adolescents During and After the COVID-19 Pandemic: National Survey Study of US Primary Care Professionals JO - J Med Internet Res SP - e31240 VL - 23 IS - 9 KW - adolescent health KW - primary care KW - telemedicine KW - health communication KW - health services KW - telehealth KW - adolescent KW - young adult KW - teenager KW - COVID-19 KW - survey KW - policy KW - access N2 - Background: The COVID-19 pandemic has led to unprecedented use of telehealth, including by primary care professionals (PCPs) who serve adolescents. Objective: To inform future practice and policies, we sought to characterize PCPs? recent experience using adolescent telehealth as well as their support for it after the COVID-19 pandemic is over. Methods: From February to March 2021, we conducted a web-based survey of 1047 PCPs in the United States. Our national sample included physicians (747/1047, 71%), advanced practice providers (177/1047, 17%), and nurses (123/1047, 12%) who provided primary care to adolescents aged 11-17 years. Results: Most PCPs reported using telehealth for a low, moderate, or high proportion of their adolescent patients in the three months prior to the survey (424/1047, 40%, 286/1047, 27%, and 219/1047, 21%, respectively); only 11% (118/1047) reported no use. A majority of respondents agreed that adolescent telehealth increases access to care (720/1047, 69%) and enables them to provide high-quality care (560/1047, 53%). Few believed that adolescent telehealth takes too much time (142/1047, 14%) or encourages health care overuse (157/1047, 15%). Most supported giving families the option of adolescent telehealth for primary care after the pandemic is over (683/1047, 65%) and believed that health insurance plans should continue to reimburse for telehealth visits (863/1047, 82%). Approximately two-thirds (702/1047, 67%) wanted to offer adolescent telehealth visits after the pandemic, with intentions being higher among those with recent telehealth experience (P<.001). Conclusions: PCPs in our national sample reported widespread use of and predominantly positive attitudes toward adolescent telehealth. Our findings also suggest broad support among PCPs for continuing to offer adolescent telehealth after the COVID-19 pandemic ends. UR - https://www.jmir.org/2021/9/e31240 UR - http://dx.doi.org/10.2196/31240 UR - http://www.ncbi.nlm.nih.gov/pubmed/34406974 ID - info:doi/10.2196/31240 ER - TY - JOUR AU - Langford, Aisha AU - Sherman, Scott AU - Thornton, Rachel AU - Nightingale, Kira AU - Kwon, Simona AU - Chavis-Keeling, Deborah AU - Link, Nathan AU - Cronstein, Bruce AU - Hochman, Judith AU - Trachtman, Howard PY - 2020/8/24 TI - Profiling Clinical Research Activity at an Academic Medical Center by Using Institutional Databases: Content Analysis JO - JMIR Public Health Surveill SP - e12813 VL - 6 IS - 3 KW - database KW - clinical studies as topic KW - vulnerable populations KW - pediatrics KW - geriatrics N2 - Background: It is important to monitor the scope of clinical research of all types, to involve participants of all ages and subgroups in studies that are appropriate to their condition, and to ensure equal access and broad validity of the findings. Objective: We conducted a review of clinical research performed at New York University with the following objectives: (1) to determine the utility of institutional administrative data to characterize clinical research activity; (2) to assess the inclusion of special populations; and (3) to determine if the type, initiation, and completion of the study differed by age. Methods: Data for all studies that were institutional review board?approved between January 1, 2014, and November 2, 2016, were obtained from the research navigator system, which was launched in November 2013. One module provided details about the study protocol, and another module provided the characteristics of individual participants. Research studies were classified as observational or interventional. Descriptive statistics were used to assess the characteristics of clinical studies across the lifespan, by type, and over time. Results: A total of 22%-24% of studies included children (minimum age <18 years) and 4%-5% focused exclusively on pediatrics. Similarly, 64%-72% of studies included older patients (maximum age >65 years) but only 5%-12% focused exclusively on geriatrics. Approximately 85% of the studies included both male and female participants. Of the remaining studies, those open only to girls or women were approximately 3 times as common as those confined to boys or men. A total of 56%-58% of projects focused on nonvulnerable patients. Among the special populations studied, children (12%-15%) were the most common. Noninterventional trial types included research on human data sets (24%), observational research (22%), survey research (16%), and biospecimen research (8%). The percentage of projects designed to test an intervention in a vulnerable population increased from 17% in 2014 to 21% in 2015. Conclusions: Pediatric participants were the special population that was most often studied based on the number of registered projects that included children and adolescents. However, they were much less likely to be successfully enrolled in research studies compared with adults older than 65 years. Only 20% of the studies were interventional, and 20%-35% of participants in this category were from vulnerable populations. More studies are exclusively devoted to women?s health issues compared with men?s health issues. UR - http://publichealth.jmir.org/2020/3/e12813/ UR - http://dx.doi.org/10.2196/12813 UR - http://www.ncbi.nlm.nih.gov/pubmed/32831180 ID - info:doi/10.2196/12813 ER -