https://pediatrics.jmir.org/issue/feedJMIR Pediatrics and Parenting2023-01-13T09:00:08-05:00JMIR Publicationseditor@jmir.orgOpen Journal Systems Unless stated otherwise, all articles are open-access distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work ("first published in the Journal of Medical Internet Research...") is properly cited with original URL and bibliographic citation information. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included. Improving pediatric and adolescent health outcomes and empowering and educating parents. https://pediatrics.jmir.org/2024/1/e49943/ Impact of COVID-19 on the Pediatric Primary Care Model in Catalonia: Analysis of Changes in the Number and Type of Face-to-Face and Remote Visits2024-03-15T14:45:15-04:00Marta Castillo-RodenasJosé Ángel Vicente GómezAïna Fuster-CasanovasQueralt Miró CatalinaJosep Vidal-AlaballFrancesc López SeguíBackground: The outbreak of COVID-19 has turned the care model of health systems around the world upside down. The healthcare crisis has led to opportunities for digital health to deliver quality care and the system has been redirected towards telemedicine. In Catalonia (Spain), as of March 2020, the pattern of visits in paediatric primary care consultations changed, such that face-to-face visits decreased in favour of non-face-to-face visits. Objective: To analyse variations in the types of visits in the field of paediatrics in primary care centres in Catalonia before and after the onset of COVID-19. Methods: Descriptive observational study based on administrative data. The number and type of visits to primary care paediatrics in Catalonia during the time interval between January 2019 and December 2022 were studied. Results: A drop of more than 80% in face-to-face visits and an increase of up to fifteen times in remote visits was observed as of March 2020 compared to the previous year. Subsequently, the face-to-face attendance rate began to recover, although it did not reach the same rate as before COVID-19. Non-face-to-face visits were maintained, representing more than 20% of the total after more than two years of the pandemic. Conclusions: COVID-19 has been the trigger for a transition in the types of visits to primary care paediatric services. The COVID-19 pandemic was a clear catalyst for the integration of telemedicine in the paediatric catalan health care. In this context, although face-to-face consultations have recovered in absolute numbers, after the pandemic period telemedicine has increased its weight. 2024-03-15T14:45:15-04:00 https://pediatrics.jmir.org/2024/1/e54163/ Mobile App/Web Platform for Monitoring Food Oral Immunotherapy in Children: Longitudinal Clinical Validation Study2024-03-13T10:15:04-04:00Sergio Sánchez-FernándezEva María LasaSoledad TerradosFrancisco Javier Sola-MartínezSara Martínez-MolinaMarta López de CallePaula Cabrera-FreitagMaría José Goikoetxea<strong>Background:</strong> Milk and egg allergies significantly impact the quality of life, particularly in children. In this regard, food oral immunotherapy (OIT) has emerged as an effective treatment option; however, the occurrence of frequent adverse reactions poses a challenge, necessitating close monitoring during treatment. <strong>Objective:</strong> This study aims to evaluate the ability of a new mobile/web app called OITcontrol to monitor milk and egg OIT. <strong>Methods:</strong> Patients undergoing milk or egg OIT were recruited and divided into 2 groups: the active group used the OITcontrol app in conjunction with standard written monitoring methods, whereas the control group relied solely on written diaries. Investigators documented hospital doses, hospital reactions, and administered treatments on the website. Patients recorded their daily allergen home-dose intake, home reactions, and administered treatments using the app. The following variables were compared between both groups: number and severity of hospital and reported home reactions, patient’s adhesion to the OITcontrol app or written diary or both in terms of daily home-dose intake and home reactions recording, and treatment and dose adjustment compliance at home in case of reaction. <strong>Results:</strong> Sixteen patients were assigned to be monitored using the OITcontrol app along with additional written methods (active group), while 14 patients relied solely on a written paper diary (control group). A similar distribution was observed in terms of sex, age, basal characteristics, allergen treated in OIT, premedication, and sensitization profile. Active patients reported a comparable number of hospital and home reactions compared with the control group. In terms of recording system usage, 13/16 (81%) active patients used the OITcontrol app, while 10/14 (71%) control patients relied on the written diary. Among active patients, 6/16 (38%) used both methods, and 1 active patient used only written methods. However, control patients recorded home reactions more frequently than active patients (<i>P</i>=.009). Among active patients, the app was the preferred method for recording reactions (59/86, 69%), compared with the written diary (15/86, 17%) or both methods (12/86, 14%; <i>P</i><.001). Treatment compliance in home-recorded reactions was similar between both groups (<i>P</i>=.15). However, treatment indications after an adverse reaction were more frequently followed (<i>P</i>=.04) in reactions recorded solely in the app (36/59, 61%) than in the written diary (29/71, 41%) or both systems (4/12, 33%). Moreover, compliance with dose adjustments after a moderate-severe reaction in home-recorded reactions was higher in the active group than in the control group (<i>P</i><.001). Home reactions recorded only in the app (16/19, 84%) were more likely to follow dose adjustments (<i>P</i><.001) than those recorded in the written diary (3/20, 15%) or using both methods (2/3, 67%). <strong>Conclusions:</strong> The OITcontrol app appears to be a valuable tool for monitoring OIT treatment in children with food allergies. It proves to be a suitable method for recording daily home dose intakes and reactions, and it seems to enhance adherence to treatment indications following an adverse reaction as well as compliance with dose adjustments in home reactions. However, additional studies are necessary to comprehensively grasp the benefits and limitations of using the OITcontrol app in the management of OIT. 2024-03-13T10:15:04-04:00 https://pediatrics.jmir.org/2024/1/e49177/ Guiding Principles for Adolescent Web-Based Portal Access Policies: Interviews With Informatics Administrators2024-03-11T11:30:04-04:00Bryan SiskAlison L AntesChristine BereitschaftMadi EnloeFabienne BourgeoisJames DuBois<strong>Background:</strong> Web-based patient portals are tools that could support adolescents in managing their health and developing autonomy. However, informatics administrators must navigate competing interests when developing portal access policies for adolescents and their parents. <strong>Objective:</strong> We aimed to assess the perspectives of informatics administrators on guiding principles for the development of web-based health care portal access policies in adolescent health care. <strong>Methods:</strong> We interviewed informatics administrators from US hospitals with ≥50 dedicated pediatric beds. We performed a thematic analysis of guiding principles for developing and implementing adolescent portal access policies. <strong>Results:</strong> We interviewed 65 informatics leaders who represented 63 pediatric hospitals, 58 health care systems, 29 states, and 14,379 pediatric hospital beds. Participants described 9 guiding principles related to three overarching themes: (1) balancing confidentiality and other care needs, (2) balancing simplicity and granularity, and (3) collaborating and advocating. Participants described the central importance of prioritizing the health and safety of the adolescent while also complying with state and federal laws. However, there were differing beliefs about how to prioritize health and safety and what role parents should play in supporting the adolescent’s health care. Participants also identified areas where clinicians and institutions can advocate for adolescents, especially with electronic health record vendors and legislators. <strong>Conclusions:</strong> Informatics administrators provided guiding principles for adolescent portal access policies that aimed to balance the competing needs of adolescent confidentiality and the usefulness of the portal. Portal access policies must prioritize the adolescent’s health and safety while complying with state and federal laws. However, institutions must determine how to best enact these principles. Institutions and clinicians should strive for consensus on principles to strengthen advocacy efforts with institutional leadership, electronic health record vendors, and lawmakers. 2024-03-11T11:30:04-04:00 https://pediatrics.jmir.org/2024/1/e51574/ Electronic Medical Record Data Missingness and Interruption in Antiretroviral Therapy Among Adults and Children Living With HIV in Haiti: Retrospective Longitudinal Study2024-03-06T16:15:10-05:00Andrew M SecorKemar CélestinMargareth JasminJean Guy HonoréAnjuli D WagnerKristin Beima-SofieJillian PintyeNancy PuttkammerBackground: Children (aged 0-14 years) living with HIV (CLH) often have lower rates of HIV diagnosis, treatment, and viral load suppression. In Haiti, only 63% of CLH know their HIV status (compared to 85% overall), 63% are on treatment (compared to 85% overall), and 48% are virally suppressed (compared to 73% overall). Electronic medical records (EMRs) can improve HIV care and patient outcomes, but these benefits are largely predicated on providers having access to quality and non-missing data. Objective: We sought to understand the associations between EMR data missingness and interruption in ART treatment (IIT) by age group (pediatric vs. adult). Methods: We assessed associations between patient intake record data missingness and IIT status at 6 and 12 months post-ART initiation using patient-level data drawn from iSante, the most widely used EMR in Haiti. Missingness was assessed for TB diagnosis, WHO HIV stage, and weight using a composite score indicator (number of indicators of interest missing). Risk ratios were estimated using marginal parameters from multilevel modified Poisson models with robust error variances and random intercepts for facility to account for clustering. Results: Data were drawn from 50 facilities and comprised 31,457 patient records from people living with HIV, of which 1,306 (4.2%) were pediatric. Pediatric patients were more likely than adult patients to experience IIT (33.0% vs. 23.4% at 6 months, P<.001), and pediatric patient records had higher data missingness (44.5% of pediatric records had at least one indicator of interest missing, compared to 25.9% of adult records, P<0.001). Among pediatric patients, each one additional indicator missing was associated with 1.34 times greater likelihood of being IIT at 6 months (95% confidence interval [CI] = 1.08–1.66, P=.008) and 1.24 times greater likelihood of being IIT at 12 months (95% CI=1.05–1.46, P=.010). These relationships were not statistically significant for adult patients. Compared to pediatric patients with zero missing indicators, pediatric patients with one, two, or three missing indicators were 1.59 (95% CI = 1.26–2.01, P<.001), 1.74 (95% CI=1.02–2.97, P=.041), and 2.25 (95% CI=1.43–3.56, P=.001) times more likely to be IIT at 6 months, respectively. Among adult patients, compared to patients with zero indicators missing, having all three indicators missing was associated with being 1.32 times more likely to be IIT at 6 months (95% CI=1.03–1.70, P=.030), while there was no association with IIT status for the other levels of missingness. Conclusions: These findings suggest that both EMR data quality and quality of care are lower for CLH in Haiti and motivate further research into the mechanisms by which EMR data quality impacts quality of care and patient outcomes among this population. Efforts to improve both EMR data quality and quality of care should consider prioritizing pediatric patients. 2024-03-06T16:15:10-05:00 https://pediatrics.jmir.org/2024/1/e50575/ The Finnegan Score for Neonatal Opioid Withdrawal Revisited With Routine Electronic Data: Retrospective Study2024-02-28T15:27:45-05:00Till RechKerstin RubarthChristoph BührerFelix BalzerChristof DameBackground: The severity of the neonatal abstinence syndrome (NAS) may be assessed by 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 min (t–1) and 120 ± 10 min (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 calculated per patient and parameter. Mixed effects models were applied to assess the effect of the 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 R2m = 0.11 as goodness of fit. Conclusions: Routine electronic data can be extracted and analyzed for correlation with FS data. Mixed effects models show small but significant effects after normalizing vital parameters to individual baselines. 2024-02-28T15:27:45-05:00 https://pediatrics.jmir.org/2024/1/e47984/ Screening and Retaining Adolescents Recruited Through Social Media: Secondary Analysis from a Longitudinal Clinical Trial2024-02-28T09:30:04-05:00Margaret WeisblumEmma TrussellTraci SchwinnAndrea R PachecoPaige Nurkin<strong>Background:</strong> Social media has become a popular method to recruit participants, particularly for studies with hard-to-reach populations. These studies still face challenges in data quality and, for longitudinal studies, sample retention. However, in addition to aiding in recruitment, social media platforms can help researchers with participant verification and tracking procedures during the study. There is limited previous research describing how longitudinal studies can use social media to screen and retain participants. <strong>Objective:</strong> This paper describes strategies implemented to screen and retain a nationwide sample of sexual minority youth who were recruited through social media platforms for a longitudinal study testing a drug abuse prevention program. <strong>Methods:</strong> Our screening strategies for participants included collecting necessary demographic information (name, phone, email, and social media accounts), verifying this information using publicly available web-based records, and sending confirmation emails to ensure working email addresses and correct dates of birth. Retention strategies included communications designed to develop positive participant relationships, incentives for survey completion, regular updating of participant contact information, targeting hard-to-reach participants, and using social media as an alternative means of contacting participants. <strong>Results:</strong> During enrollment, although the only demographic data required were a phone number and an email address, 87.58% (1065/1216) of participants provided their Instagram as an alternative means of contact. This form of alternative communication remains the most preferred with 87.40% (1047/1198) of participants continuing to provide an Instagram username as of January 2023, about 3 years after recruitment began. In comparison, other alternative means of contact (eg, Facebook and alternative email) were provided by only 6.43% (77/1198) to 56.18% (673/1198) of participants. Direct messaging on Instagram was used to successfully confirm participant identity, remind participants to take annual follow-up surveys, and update lost participant contact information. Screening and retention strategies used in the study have helped achieve 96.30% (1171/1216) to 96.79% (1177/1216) sample retention across 3 waves of data collection. <strong>Conclusions:</strong> Though social media can be a helpful tool to recruit participants, attrition and participant authenticity difficulties may be associated with this method. Screening and retention strategies can be implemented to improve retention. Internet searches are effective for screening youth to ensure they meet eligibility requirements. Additionally, social media—Instagram in this study—can help to track and locate participants who do not respond to traditional contact methods. <strong>Trial Registration:</strong> ClinicalTrials.gov NCT03954535; https://clinicaltrials.gov/study/NCT03954535 2024-02-28T09:30:04-05:00 https://pediatrics.jmir.org/2024/1/e55560/ Rates of Trauma Exposure and Posttraumatic Stress in a Pediatric Digital Mental Health Intervention: Retrospective Analysis of Associations With Anxiety and Depressive Symptom Improvement Over Time2024-02-27T09:30:04-05:00Darian Lawrence-SidebottomLandry Goodgame HuffmanAislinn Brenna BeamRachael GuerraAmit ParikhMonika RootsJennifer Huberty<strong>Background:</strong> More than 2 out of 3 children and adolescents in the United States experience trauma by the age of 16 years. Exposure to trauma in early life is linked to a range of negative mental health outcomes throughout the lifespan, particularly co-occurring symptoms of posttraumatic stress (PTS), anxiety, and depression. There has been an increasing uptake of digital mental health interventions (DMHIs) among youths, particularly for anxiety and depression. However, little is known regarding the incidence of trauma exposure and PTS symptoms among youths participating in DMHIs and whether PTS symptoms impact anxiety and depressive symptom treatment response. Moreover, it is unclear whether participation in a DMHI for anxiety and depressive symptoms is associated with secondary effects on PTS symptoms among trauma-exposed youths. <strong>Objective:</strong> This study aims to use retrospective data from youths participating in a DMHI to (1) characterize rates of trauma, PTS, and comorbid anxiety and depressive symptoms; (2) determine whether trauma exposure and elevated PTS symptoms impact the improvement of comorbid anxiety and depressive symptoms throughout participation in care; and (3) determine whether participation in a non–posttraumatic DMHI is linked to reductions in PTS symptoms. <strong>Methods:</strong> This study was conducted using retrospective data from members (children ages 6 to 12 years) involved in a pediatric collaborative care DMHI. Participating caregivers reported their children’s trauma exposure. PTS, anxiety, and depressive symptom severity were measured monthly using validated assessments. <strong>Results:</strong> Among eligible participants (n=966), 30.2% (n=292) reported at least 1 traumatic event. Of those with trauma exposure and elevated symptoms of PTS (n=119), 73% (n=87) exhibited elevated anxiety symptoms and 50% (n=59) exhibited elevated depressive symptoms. Compared to children with no trauma, children with elevated PTS symptoms showed smaller reductions per month in anxiety but not depressive symptoms (anxiety: <i>F</i><sub>2,287</sub>=26.11; <i>P</i><.001). PTS symptoms also decreased significantly throughout care, with 96% (n=79) of participants showing symptom reductions. <strong>Conclusions:</strong> This study provides preliminary evidence for the frequency of trauma exposure and comorbid psychiatric symptoms, as well as variations in treatment response between trauma-exposed and nontrauma-exposed youths, among participants in a pediatric collaborative care DMHI. Youths with traumatic experiences may show increased psychiatric comorbidities and slower treatment responses than their peers with no history of trauma. These findings deliver compelling evidence that collaborative care DMHIs may be well-suited to address mental health symptoms in children with a history of trauma while also highlighting the critical need to assess symptoms of PTS in children seeking treatment. 2024-02-27T09:30:04-05:00 https://pediatrics.jmir.org/2024/1/e49952/ A Risk Assessment and Planning Tool to Prevent Sudden Unexpected Death in Infancy: Development and Evaluation of The Baby Sleep Planner2024-02-22T09:15:03-05:00Anna PeaseJenny IngramBecky LambertKaren PatrickKieren PittsPeter J FlemingPeter S BlairThe Baby Sleep Project Family Advisory Group<strong>Background:</strong> Successful national safer sleep campaigns in the United Kingdom have lowered the death rates from sudden unexpected death in infancy (SUDI) over the past 3 decades, but deaths persist in socioeconomically deprived families. The circumstances of current deaths suggest that improvements in support for some families to follow safer sleep advice more consistently could save lives. <strong>Objective:</strong> This study aimed to develop and evaluate a risk assessment and planning tool designed to improve the uptake of safer sleep advice in families with infants at increased risk of SUDI. <strong>Methods:</strong> A co-design approach was used to develop the prototype interface of a web-based tool with 2 parts: an individual SUDI risk assessment at birth and a downloadable plan for safety during times of disruption. The advice contained within the tool is concordant with national guidance from the Lullaby Trust, the United Nations International Children’s Emergency Fund (UNICEF), and the National Institute for Health and Care Excellence. User testing of the prototype tool was conducted by inviting health visitors, midwives, and family nurses to use it with families eligible for additional support. Qualitative interviews with health professionals and families allowed for iterative changes to the tool and for insights into its function and influence on parental behavior. <strong>Results:</strong> A total of 22 health professionals were enrolled in the study, of whom 20 (91%) were interviewed. They reported appreciating the functionality of the tool, which allowed them to identify at-risk families for further support. They felt that the tool improved how they communicated about risks with families. They suggested expanding its use to include relevance in the antenatal period and having versions available in languages other than English. They reported using the tool with 58 families; 20 parents gave consent to be interviewed by the research team about their experiences with the tool. Families were positive about the tool, appreciated the trustworthy information, and felt that it was useful and appropriate and that the plans for specific infant sleeps would be of benefit to them and other family members. <strong>Conclusions:</strong> Our tool combines risk assessment and safety planning, both of which have the potential to improve the uptake of lifesaving advice. Refinements to the tool based on these findings have ensured that the tool is ready for further evaluation in a larger study before being rolled out to families with infants at increased risk. 2024-02-22T09:15:03-05:00 https://pediatrics.jmir.org/2024/1/e54414/ Young Children and the Creation of a Digital Identity on Social Networking Sites: Scoping Review2024-02-21T09:30:04-05:00Valeska BergDiana ArabiatEvalotte MoreliusLisa KervinMaggie ZgamboSuzanne RobinsonMark JenkinsLisa Whitehead<strong>Background:</strong> There is limited understanding of the concept of the digital identity of young children created through engagement on social networking sites. <strong>Objective:</strong> The objective of this scoping review was to identify key characteristics of the concept of digital identity for children from conception to the age of 8 years on social networking sites. <strong>Methods:</strong> This scoping review was conducted using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. The key databases searched were EBSCO, Web of Science, ProQuest ERIC, and Scopus. Gray literature sources (National Grey Literature Collection, ProQuest Dissertations and Theses, and Google Scholar) were also searched to identify unpublished studies. Articles were selected if they were published in English and reported data on the digital identity of children in relation to social networking sites. <strong>Results:</strong> The key terms used in the literature were <i>sharenting</i>, followed by <i>digital footprints</i> and <i>children’s identities</i>. Our study revealed 2 approaches to the creation of digital identity: <i>social digital identity</i> and <i>performative digital identity</i>. The articles in this review most commonly used the term <i>sharenting</i> to describe the behavior parents engage in to create digital identities for children on social networking sites. Motivations to post information about children differed among parents; however, the most common reasons were to share with friends and family and create digital archives of childhood photos, termed <i>social digital identity</i>. The second motivation was categorized as performative digital identity. The risk of digital kidnapping and identity theft associated with the creation of digital identities also influenced parents’ behaviors. <strong>Conclusions:</strong> The creation of a digital identity for children is an emerging concept. Our review develops a deeper understanding of sharenting behaviors that can be used to better support parents and their children in creating a digital identity with children and awareness of the potential future impact. We recommend that future studies explore the perspectives of children as key stakeholders in the creation of their digital identity. 2024-02-21T09:30:04-05:00 https://pediatrics.jmir.org/2024/1/e47092/ Building a Sustainable Learning Health Care System for Pregnant and Lactating People: Interview Study Among Data Access Providers2024-02-08T09:45:03-05:00Marieke J HollestelleRieke van der GraafMiriam C J M SturkenboomMarianne CunningtonJohannes J M van Delden<strong>Background:</strong> In many areas of health care, learning health care systems (LHSs) are seen as promising ways to accelerate research and outcomes for patients by reusing health and research data. For example, considering pregnant and lactating people, for whom there is still a poor evidence base for medication safety and efficacy, an LHS presents an interesting way forward. Combining unique data sources across Europe in an LHS could help clarify how medications affect pregnancy outcomes and lactation exposures. In general, a remaining challenge of data-intensive health research, which is at the core of an LHS, has been obtaining meaningful access to data. These unique data sources, also called data access providers (DAPs), are both public and private organizations and are important stakeholders in the development of a sustainable and ethically responsible LHS. Sustainability is often discussed as a challenge in LHS development. Moreover, DAPs are increasingly expected to move beyond regulatory compliance and are seen as moral agents tasked with upholding ethical principles, such as transparency, trustworthiness, responsibility, and community engagement. <strong>Objective:</strong> This study aims to explore the views of people working for DAPs who participate in a public-private partnership to build a sustainable and ethically responsible LHS. <strong>Methods:</strong> Using a qualitative interview design, we interviewed 14 people involved in the Innovative Medicines Initiative (IMI) ConcePTION (Continuum of Evidence from Pregnancy Exposures, Reproductive Toxicology and Breastfeeding to Improve Outcomes Now) project, a public-private collaboration with the goal of building an LHS for pregnant and lactating people. The pseudonymized transcripts were analyzed thematically. <strong>Results:</strong> A total of 3 themes were identified: opportunities and responsibilities, conditions for participation and commitment, and challenges for a knowledge-generating ecosystem. The respondents generally regarded the collaboration as an opportunity for various reasons beyond the primary goal of generating knowledge about medication safety during pregnancy and lactation. Respondents had different interpretations of responsibility in the context of data-intensive research in a public-private network. Respondents explained that resources (financial and other), scientific output, motivation, agreements collaboration with the pharmaceutical industry, trust, and transparency are important conditions for participating in and committing to the ConcePTION LHS. Respondents also discussed the challenges of an LHS, including the limitations to (real-world) data analyses and governance procedures. <strong>Conclusions:</strong> Our respondents were motivated by diverse opportunities to contribute to an LHS for pregnant and lactating people, primarily centered on advancing knowledge on medication safety. Although a shared responsibility for enabling real-world data analyses is acknowledged, their focus remains on their work and contribution to the project rather than on safeguarding ethical data handling. The results of our interviews underline the importance of a transparent governance structure, emphasizing the trust between DAPs and the public for the success and sustainability of an LHS. 2024-02-08T09:45:03-05:00