OBJECTIVE: Mobile health (mHealth) interventions may be an efficacious strategy for promoting health behaviors among pediatric populations, but their success at the implementation stage has proven challenging. The purpose of this article is to provide a blueprint for using human-centered design (HCD) methods to maximize the potential for implementation, by sharing the example of a youth-, family-, and clinician-engaged process of creating an mHealth intervention aimed at promoting healthcare transition readiness.
METHODS: Following HCD methods in partnership with three advisory councils, we conducted semistructured interviews with 13- to 15-year-old patients and their caregivers in two phases. In Phase 1, participants described challenges during the transition journey, and generated ideas regarding the format, content, and other qualities of the mHealth tool. For Phase 2, early adolescents and caregivers provided iterative feedback on two sequential intervention prototypes. Data were analyzed using thematic analysis in Phase 1 and the rapid assessment process for Phase 2.
RESULTS: We interviewed 11 youth and 8 caregivers. The sample included adolescents with a range of chronic health conditions. In Phase 1, participants supported the idea of developing an autonomy-building tool, delivering transition readiness education via social media style videos. In Phase 2, participants responded positively to the successive prototypes and provided suggestions to make information accessible, relatable, and engaging.
CONCLUSIONS: The procedures shared in this article could inform other researchers\' plans to apply HCD in collaboration with implementation partners to develop mHealth interventions. Our future directions include iteratively developing more videos to promote transition readiness and implementing the intervention in clinical care.

OBJECTIVE: Youth living with HIV (YLHIV) in the southern United States experience poor outcomes across the HIV care continuum and are at high-risk for virologic failure. This study used a qualitative, community-engaged approach to inform the development of a tailored mobile Health (mHealth) tool for YLHIV in South Carolina (SC).
METHODS: Semistructured qualitative interviews were conducted with YLHIV in SC (n = 16) and their HIV care providers (n = 15). Focus group discussions (FGDs) were also conducted with HIV-focused community-based organization staff (n = 23). Interviews and FGDs queried desired components for a future mHealth tool tailored for YLHIV. Data were analyzed using a team-based rapid qualitative approach.
RESULTS: Across informants, key themes emerged related to medical management of HIV, including a desire for connections with medical providers, appointment and medication reminders, and accurate HIV information. In addition, informants voiced a desire for mental health resources to be integrated into the app. Connection with HIV-positive peers also emerged as a key desire from youth informants. In terms of app design, informants emphasized the need for strict privacy practices, a youth-friendly design, compensation for use, and integration with existing healthcare systems.
CONCLUSIONS: mHealth interventions developed for YLHIV should meet the mental health and social needs of YLHIV in addition to their medical needs. In addition, the highly stigmatized nature of HIV requires careful consideration when designing digital tools-youth want their privacy prioritized, but also express strong desire for social support to help cope with the isolation and stigma of this chronic health condition.

OBJECTIVE: This meta-analysis examined the efficacy of adherence-promotion interventions for children, adolescents, and young adults prescribed a medication for > 90 days as part of a treatment regimen for a medical condition.
METHODS: A systematic literature review was conducted to identify randomized controlled trials of adherence-promotion interventions published between 2013 and 2023 and including children, adolescents, and/or young adults with a medical condition. A total of 38 articles representing 39 trials met inclusion criteria. A narrative synthesis was conducted to summarize included trials and a random-effects model was used to compute an overall intervention effect. Effect sizes by adherence outcome assessment methodology, participant age, and technology use were also computed.
RESULTS: Pediatric adherence-promotion interventions demonstrate a medium effect with those randomized to an intervention displaying greater improvements in medication adherence than those randomized to a comparator condition (SMD = 0.46, 95% CI: 0.31, 0.60, n = 37; 95% Prediction Interval: -0.32, 1.23).
CONCLUSIONS: Adherence interventions for children, adolescents, and young adults with medical conditions increase adherence.

OBJECTIVE: Suboptimal nutritional adherence in adolescents with cystic fibrosis (awCF) has been associated with lower lung function. AwCF often have more independence in dietary decisions than younger children, yet little research has examined how adolescent decision-making relates to nutritional adherence. This study explored whether components of adolescent decision-making involvement facilitate enzyme and caloric adherence in awCF.
METHODS: 37 families participated and completed study procedures. AwCF and caregivers completed electronic surveys, including the Decision-Making Involvement Scale (DMIS). The DMIS evaluated awCF behaviors during nutrition-related decision-making/discussions with caregivers using DMIS subscales: Child Seek (asking for help/advice from caregivers), Child Express (awCF stating opinions) and Joint/Options (awCF participating in joint decision-making or caregiver providing options). AwCF completed 2, 24-hr diet recalls via videoconferencing/phone to estimate adherence. Chart reviews collected medical information. DMIS subscales were regressed onto enzyme and caloric adherence.
RESULTS: 43% of awCF met calorie recommendations; 48.6% took all enzymes as prescribed. Caloric adherence was positively correlated with adolescent- and parent-reported Child Seek (r = 0.53; r = 0.36) and adolescent-reported Joint/Options (r = 0.41). Per adolescent-report, the caloric adherence regression model was significant, with Child Seek contributing unique variance in caloric adherence (β = .62, p = .03). Parent-reported adolescent-decision-making involvement significantly predicted caloric adherence, but none of the subscales contributed unique variance. No other regressions were significant.
CONCLUSIONS: When awCF participated in nutrition-related discussions with a caregiver, especially with questions, caloric adherence was better. Future research should examine whether family factors influence these results. AwCF are encouraged to ask questions in nutrition discussions.

OBJECTIVE: To evaluate the efficacy and costs of a brief, group-delivered parenting intervention for families of children with eczema.
METHODS: A randomized controlled trial design was used. Families attending the Queensland Children\'s Hospital and from the community (n = 257) were assessed for eligibility (child 2-10 years, diagnosed with eczema, prescribed topical corticosteroids). Families who consented to participate (N = 59) were assessed at baseline for clinician-rated eczema severity, parent-reported eczema symptom severity, and electronically-monitored topical corticosteroid adherence (primary outcomes); and parenting behavior, parents\' self-efficacy and task performance when managing eczema, eczema-related child behavior problems, and child and parent quality of life (secondary outcomes). Families were randomized (1:1, unblinded) to intervention (n = 31) or care-as-usual (n = 28). The intervention comprised two, 2-hr Healthy Living Triple P group sessions (face-to-face/online) and 28 intervention families attended one/both sessions. All families were offered standardized eczema education. Families were reassessed at 4-weeks post-intervention and 6-month follow-up, with clinician-raters blinded to condition. Costs of intervention delivery were estimated.
RESULTS: Multilevel modeling across assessment timepoints showed significant intervention effects for ineffective parenting (d = .60), self-efficacy (d = .74), task performance (d = .81), and confidence with managing eczema-related child behavior (d = .63), but not disease/symptom severity, treatment adherence or quality of life. Mean cost per participating family with parenting behavior (clinically) improved was $159.
CONCLUSIONS: Healthy Living Triple P is effective in reducing ineffective parenting practices and improving parents\' self-efficacy and task performance when managing children\'s eczema and eczema-related behavior difficulties. There was no effect on disease/symptom severity, treatment adherence, or quality of life.
BACKGROUND: ACTRN12618001332213.

OBJECTIVE: Neurofibromatosis type 1 (NF1) is a genetic cancer predisposition syndrome that can impact multiple organ systems and is associated with plexiform neurofibroma tumors, requiring care from birth through adulthood. Adolescents and young adults (AYAs) with NF1 face several barriers to transition from pediatric to adult care. This cross-sectional study aimed to assess transition readiness in this population and to evaluate relationships between specific NF1 symptoms and transition readiness.
METHODS: AYAs (aged 16-24) enrolled in existing studies related to NF1 were eligible. AYAs and their parents completed measures of transition readiness (Transition Readiness Assessment Questionnaire version 4 [TRAQ-4]), and AYAs also completed a transition readiness interview (UNC TRxANSITION).
RESULTS: Thirty-eight AYAs (mean age = 19.95 ± 2.68 years) participated in the study. Average TRAQ scores indicated that AYAs were still learning Self-Management skills (M = 3.37, SD = 1.08) and Self-Advocacy skills (M = 3.98, SD = 0.67). Older AYAs had higher TRAQ scores for Self-Management (r = 0.70, p < .001) and Self-Advocacy (r = 0.41, p = .011) than younger AYAs. Parents and AYAs had similar TRAQ scores. About one third of AYAs (37.8%, n = 14) expressed uncertainty about how NF1 might affect them in the future. The remaining AYAs mostly expressed concerns regarding tumor growth, pain, or cancer.
CONCLUSIONS: In this small study, preliminary findings suggest that AYAs with NF1 express confidence in many areas of transition readiness but continue to require support, particularly with Self-Management skills. Given the gaps in understanding of future health risks, AYAs with NF1 would benefit from early assessment, psychoeducation, and support for transition readiness to adult care.

Cognitive disengagement syndrome (CDS, previously referred to as sluggish cognitive tempo) is a unique set of symptoms distinct from ADHD inattentive symptoms that appear to be independently associated with neuropsychological and psychosocial outcomes in community and ADHD-specific samples of youth. However, our understanding of CDS in individuals with chronic or complex medical conditions is limited. The current systematic review is the first to summarize the literature on CDS prevalence rates and associations with neurocognitive and functional outcomes in youth with medical conditions, and to discuss areas of future research to guide clinical intervention. We conducted literature searches across four major databases and included studies assessing prevalence estimates, associations with neuropsychological and/or psychosocial functioning, or predictors of CDS in individuals with chronic or complex medical conditions. Twenty-five studies were identified and retained. Fifteen of sixteen studies reported elevations in CDS symptoms, though findings were mixed in studies comparing mean differences to typically developing youth. Seven studies provided inconsistent evidence for CDS being associated with neuropsychological or academic functioning, with six studies demonstrating consistent effects on psychosocial functioning. Finally, nine studies identified biological and sociodemographic factors associated with CDS, though almost all await replication. CDS symptoms are significantly elevated in youth with medical conditions and appear to be particularly linked with psychosocial functioning. Future research is needed to identify prevalence of CDS across a range of medical conditions, examine associations with neuropsychological and psychosocial functioning, and examine whether CDS impacts self-management.

OBJECTIVE: Examine preventive medication adherence among youth with migraine.
METHODS: Adherence (self-report, pill count, and blood serum drug levels) was assessed as an ancillary study that utilized data from 328 CHAMP Study participants (ages 8-17). CHAMP was a multisite trial of preventive medications. Participants completed a prospective headache diary during a six-month active treatment period during which youth took amitriptyline, topiramate, or placebo pill twice daily. Self-reported medication adherence was collected via daily diary. At monthly study visits, pill count measures were captured. At trial month 3 (trial midpoint) and 6 (end of active trial), blood serum drug levels were obtained. Self-report and pill count adherence percentages were calculated for the active trial period, at each monthly study visit, and in the days prior to participants\' mid-trial blood draw. Percentages of nonzero drug levels were calculated to assess blood serum drug level data. Adherence measures were compared and assessed in context of several sociodemographic factors. Multiple regression analyses investigated medication adherence as a predictor of headache outcomes.
RESULTS: Self-report and pill count adherence rates were high (over 90%) and sustained over the course of the trial period. Serum drug level adherence rates were somewhat lower and decreased significantly (from 84% to 76%) across the trial period [t (198) = 3.23, p = .001]. Adherence measures did not predict headache days at trial end; trial midpoint serum drug levels predicted headache-related disability.
CONCLUSIONS: Youth with migraine can demonstrate and sustain relatively high levels of medication adherence over the course of a clinical trial.

OBJECTIVE: A previously published exploratory factor analysis suggested that the Hypoglycemia Fear Survey-Child and Parent Versions, is comprised of three subscales: Maintain High Blood Glucose, Helplessness/Worry About Low Blood Glucose, and Worry About Negative Social Consequences. The primary aim of this study was to confirm this three-factor model with a clinical population of adolescents with type 1 diabetes (T1D) and their caregivers.
METHODS: Participants included N = 1,035 youth ages 10-17.99 years with T1D, and their female (N = 835) and/or male (N = 326) caregivers who completed the Hypoglycemia Fear Survey independently during a routine medical appointment. We conducted confirmatory factor analysis and examined reliability of the Hypoglycemia Fear Survey and its associations with demographics and clinical outcomes (e.g., mean blood glucose, glycemic control).
RESULTS: Confirmatory factor analysis supported the three-factor model in youth and female and male caregivers. The internal consistencies for Maintain High Blood Glucose, Helplessness/Worry About Low Blood Glucose, and Worry About Negative Social Consequences were acceptable. The majority of demographic and clinical outcome variables correlated as hypothesized with the three subscales.
CONCLUSIONS: Using a large clinical sample of adolescents with T1D and their caretakers, we confirmed the three-factor model for the Hypoglycemia Fear Survey, which is sufficiently reliable to be used in a clinical setting. Important areas of future research include examining moderators for the effect of fear of hypoglycemia on clinical outcomes, and possible inclusion of items related to modern diabetes devices.

To replicate the factor structure of a patient-report measure of provider communication about key medication prescription information, the Communication about Medication by Providers-Adolescent and Young Adult (CAMP-AYA) Version. We evaluated whether the 15-item, two-factor structure identified previously could be replicated via confirmatory factor analysis, and we also examined fit of unidimensional and bifactor models. Associations of CAMP-AYA Total and Factor Scores with provider satisfaction and select patient and medication characteristics were also examined.
Participants were 739 AYA (ages 18-25) who completed the CAMP-AYA, a provider satisfaction rating, and provided demographic and medication information.
The bifactor model was best fitting (χ2 [75] = 689.60, p < .0001; root mean squared error of approximation = 0.11, 90% CI [0.10, 0.11]; Comparative Fit Index = 0.98; Tucker-Lewis Index = 0.98; Standardized Root Mean Square Residual Index = 0.02). Internal consistency reliabilities for Total and Factor Scores were high (αs > .89) and Total and Factor Scores were associated with provider satisfaction (ps < .001). CAMP-AYA scores varied as a function of type of prescription (short vs. long term; new vs. refill), with higher scores reported in the context of long term (>30-day course) or refilled prescriptions (ps < .007) in most cases.
This study provides additional support for the reliability of the CAMP-AYA as a tool to assess AYA perceptions of provider key information coverage about medication prescriptions.