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User-centered models for the development of digital health interventions are not consistently applied in healthcare settings. This study used a five-phase, user-centered approach to develop HEARTPrep©, a psychosocial intervention delivered via mobile app and telehealth to mothers expecting a baby with congenital heart disease (CHD) to promote maternal, family, and child well-being. Phases of intervention development were: (I) establishing partnerships; (II) creating content; (III) developing prototype and testable intervention; (IV) conducting think-aloud testing; and (V) completing beta testing. Partnerships with parents, clinicians, and design/technology experts were integral throughout the development of HEARTPrep©. Parents of children with CHD also served as participants in Phases II-V, contributing to the creation of content and providing feedback to inform the iterative refinement of HEARTPrep©. These five phases produced a refined digital health intervention with promising feasibility, usability, and acceptability results. This user-centered approach can be used to develop digital health interventions targeting various health outcomes. [ABSTRACT FROM AUTHOR]

Adolescent/young adult cancer survivors (AYACS) struggle with poor psychosocial health related to social disruptions due to cancer diagnosis, impacting long-term goal achievement and overall health. In particular, social health promotion is overlooked in AYACS' care. AYA-UNITE, a sociobehavioral exercise intervention pilot for AYACS 15–21 years of age at cancer diagnosis, was designed to foster AYACS' social and physical health. AYA-UNITE was a 12-week group-based virtual exercise program incorporating strength training and aerobic activity. In this brief report, we account AYA-UNITE's conceptual design, lessons learned through AYA-UNITE intervention development, and opportunities for improvement in implementing effective AYACS psychosocial interventions (NCT03778658). [ABSTRACT FROM AUTHOR]

Background: Few studies have examined the implementation of the International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines for the Psychological Care of Children and Adolescents with Type 1 Diabetes. Objective: To collect benchmark data on psychosocial staffing and implementation of the ISPAD guidelines across U.S. pediatric diabetes clinics. Methods: Medical (n = 95; 77 endocrinologists and 18 advance practice providers) and psychosocial (n = 86; 43 social workers and 43 psychologists) providers from 98 of 115 contacted clinics completed an online survey (85% response rate). Providers reported the number of psychosocial staff and rated the adequacy of psychosocial staffing, quality of psychosocial care, and adherence to the ISPAD guidelines in their clinics. χ2 Tests and ANOVA were used to examine differences across clinic size and across medical and psychosocial providers. Results: Clinics averaged a total of ∼4 hours per week of psychosocial provider time per 100 patients with type 1 diabetes. Only 27% of providers agreed that psychosocial staffing was adequate, and 35% described their psychosocial care as comprehensive. Implementation of the ISPAD guidelines varied across clinics, with minimal differences across clinic size. Medical providers reported that evidence-based psychological assessment and interventions were delivered consistently by <55% of clinics. Psychosocial, compared with medical, providers were more likely to report frequent implementation of psychosocial assessment and intervention guidelines. Conclusion: Psychological care in U.S. pediatric type 1 diabetes clinics does not consistently meet the ISPAD guidelines, and many clinics lack adequate psychosocial staff. These benchmark data are a foundational step to improve psychosocial care for pediatric patients with type 1 diabetes. [ABSTRACT FROM AUTHOR]

Objective: The COVID-19 pandemic has disrupted traditional health care, including pediatric health care. We described the impact of the pandemic on disparities in pediatric health care engagement. Methods: Using a population-based cross-sectional time-series design, we compared monthly ambulatory care visit volume and completion rates (completed vs no-show and cancelled visits) among pediatric patients aged 0-21 years in 4 states in the mid-Atlantic United States during the first year of the COVID-19 pandemic (March 2020–February 2021) with the same period before the pandemic (March 2019–February 2020). We used unadjusted odds ratios, stratified by visit type (telehealth or in-person) and sociodemographic characteristics (child race and ethnicity, caregiver primary language, geocoded Child Opportunity Index, and rurality). Results: We examined 1 556 548 scheduled ambulatory care visits for a diverse pediatric patient population. Visit volume and completion rates (mean, 70.1%) decreased during the first months of the pandemic but returned to prepandemic levels by June 2020. Disparities in in-person visit completion rates among non-Hispanic Black versus non-Hispanic White patients (64.9% vs 74.3%), patients from socioeconomically disadvantaged versus advantaged communities as measured by Child Opportunity Index (65.8% vs 76.4%), and patients in rural versus urban neighborhoods (66.0% vs 70.8%) were the same during the remainder of the first year of the pandemic as compared with the previous year. Concurrent with large increases in telehealth (0.5% prepandemic, 19.0% during the pandemic), telehealth completion rates increased. Conclusions: Disparities in pediatric visit completion rates that existed before the pandemic persisted during the pandemic. These findings underscore the need for culturally tailored practices to reduce disparities in pediatric health care engagement. [ABSTRACT FROM AUTHOR]

Objective: Psychosocial screening can facilitate the identification of families who have difficulty adjusting to and managing serious pediatric illness. Despite siblings' roles within the family and increased psychosocial risk, a systematic approach to screening siblings of youth with cancer remains rare. One barrier to systematic sibling screening is the lack of a validated screener. We aimed to establish initial validity of the new parent-reported Psychosocial Assessment Tool (PAT) Sibling Modules for siblings ages 0-2, 3-4, 5-9, and 10+.Methods: Families (N = 64) completed the PAT Sibling Modules and the Strengths and Difficulties Questionnaire (SDQ) regarding siblings' functioning at cancer diagnosis (13-23 items, depending on age version) and 6 months later (17-42 items). Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity of the PAT Sibling Modules.Results: Baseline and follow-up versions of the modules have strong internal consistency (Kuder-Richardson 20 range: 0.82-0.93) and convergent validity at diagnosis (r-values ≥0.4, p-values <0.01) and follow-up (r-values >0.4, p-values <0.05). Predictive validity was supported by significant correlations between baseline PAT Sibling Module scores and 6 month SDQ scores (r = 0.86, p < 0.001).Conclusions: Findings provide initial evidence that the PAT Sibling Modules are valid measures of sibling psychosocial risk. Availability of a validated screener is a first step toward addressing siblings' unmet psychosocial needs. [ABSTRACT FROM AUTHOR]

Objective: The Psychosocial Assessment Tool (PAT) is a well-validated, brief screener of family psychosocial risk. Since 2014 a web-based version of the PAT (WebPAT) has been available for use by clinicians and researchers, but the psychometric properties have not been examined. The objective of this article was to examine the factor structure and internal consistency of the WebPAT, which was administered to caregivers of youth with cancer.Methods: The WebPAT was administered to 1,252 caregivers of youth with cancer across 29 institutions. Confirmatory factor analysis (CFA) was used to examine the factor structure of the WebPAT. Internal consistencies of the total and subscale scores were examined via the Kuder-Richardson 20 coefficient. The distribution of total PAT score across the three risk categories of the Pediatric Psychosocial Preventative Health Model (PPPHM) was also examined.Results: The CFA supported the original seven-factor structure of the PAT (Family Structure, Social Support, Child Problems, Sibling Problems, Family Problems, Stress Reactions, and Family Beliefs). Internal consistencies were strong for the total PAT score and four subscales (Social Support, Child Problems, Sibling Problems, and Family Problems). The distribution of total PAT scores across PPPHM risk categories was consistent with prior research.Conclusions: The WebPAT is a psychometrically sound screener of psychosocial risk in families of youth with cancer. Healthcare providers can use the WebPAT to assess families' psychosocial risk and guide the provision of psychosocial care. Future research should evaluate the implementation of the PAT and identify barriers and facilitators to implementation. [ABSTRACT FROM AUTHOR]

Background: Childhood cancer affects and is affected by multiple levels of the social ecology, including social and relational determinants of health (e.g., economic stability, housing, childcare, healthcare access, child and family problems). The 2015 Standards of Psychosocial Care in Pediatric Cancer outline optimal psychosocial care sensitive to these ecological factors, starting with assessment of psychosocial healthcare needs to promote medical and psychosocial outcomes across all children with cancer. To address the first standard of family psychosocial assessment, the Psychosocial Assessment Tool (PAT) is a validated screener ready for broad implementation.Method: The PAT will be implemented across a national sample of 18 pediatric cancer programs ranging in size (annual new patients) in a mixed methods, comparative effectiveness study, guided by the Interactive Systems Framework for Dissemination and Implementation, comparing two implementation strategies. It is hypothesized that implementation will be more successful at the patient/family, provider, and institutional level when training (strategy I) is combined with implementation expanded resources (strategy II). There are three aims: (1) Refine the two implementation strategies using semi-structured qualitative interviews with 19 stakeholders including parent advocates, providers, pediatric oncology organization representatives, healthcare industry leaders; (2) Compare the two theoretically based and empirically informed strategies to implement the PAT in English and Spanish using a cluster-randomized controlled trial across 18 sites. Stratified by size, sites will be randomized to cohort (3) and strategy (2). Outcomes include adoption and penetration of screening (patient/family), staff job satisfaction/burnout (provider), and cost-effective use of resources consistent with family risk (institution); (3) Based on the results of the trial and feedback from the first and second aim, we will develop and disseminate a web-based PAT Implementation Toolkit.Discussion: Use of the PAT across children's cancer programs nationally can achieve the assessment standard and inform equitable delivery of psychosocial care matched to family need for all patients.Trial Registration: ClinicalTrials.gov , NCT04446728 , registered 23 June 2020. [ABSTRACT FROM AUTHOR]

Purpose: How cancer history and distress relate to sleep outcomes of adolescents and young adults (AYAs) is unclear. The current study compares AYA cancer survivors to controls on indicators of sleep and fatigue; examines the concurrent association between psychological status, sleep, and fatigue; and investigates the lagged relationship between sleep and fatigue problems with psychological functioning.Methods: AYA cancer survivors (n = 167) and controls (n = 170), ages 16 to 30, completed measures at a survivorship clinic/primary care visit (time 1) and 2 months later (time 2). Participants completed questions about sleep quality, quantity, sleep medication use, self-reports of sleep problems, and fatigue in addition to measures of depression, anxiety, and posttraumatic stress symptoms (PTSS).Results: There were no differences in sleep quantity or quality between survivors and controls, but survivors reported significantly more fatigue. Within groups, AYAs with self-reported sleep and fatigue problems reported significantly higher depression, anxiety, and PTS symptoms. Controlling for baseline depression, sleep, and fatigue problems at time 1 significantly predicted depression at time 2 in survivors but not in controls.Conclusion: This study offers important insight into the psychological functioning of childhood cancer survivors and prospectively describes sleep and fatigue as risk factors for poor psychological functioning in survivors. These findings support screening for sleep problems in AYA survivors as these difficulties are closely related to mental health functioning. [ABSTRACT FROM AUTHOR]

Objective: The objective of this systematic review is to reevaluate and update the Integrative Model of Pediatric Medical Traumatic Stress (PMTS; Kazak et al., 2006), which provides a conceptual framework for traumatic stress responses across pediatric illnesses and injuries.Methods: Using established systematic review guidelines, we searched PsycINFO, Cumulative Index to Nursing and Allied Health Literature, and PubMed (producing 216 PMTS papers published since 2005), extracted findings for review, and organized and interpreted findings within the Integrative Model framework.Results: Recent PMTS research has included additional pediatric populations, used advanced longitudinal modeling techniques, clarified relations between parent and child PMTS, and considered effects of PMTS on health outcomes. Results support and extend the model's five assumptions, and suggest a sixth assumption related to health outcomes and PMTS.Conclusions: Based on new evidence, the renamed Integrative Trajectory Model includes phases corresponding with medical events, adds family-centered trajectories, reaffirms a competency-based framework, and suggests updated assessment and intervention implications. [ABSTRACT FROM AUTHOR]

Background: Pediatric medical experiences are potentially traumatic but may lead to psychological growth. Objective: The study objective was to synthesize the published literature regarding posttraumatic growth (PTG) in parents and patients with serious pediatric illness (SPI) into a conceptual model. Methods: We systematically searched MEDLINE, CINAHL, PsychInfo, and Sociological Abstracts in December 2012 to identify articles on stress or trauma caused by medical events with PTG as an outcome, reviewing articles pertaining to the pediatric population. We additionally reviewed articles outside pediatric medicine that described a model of PTG. Results: Of the 605 articles identified, 55 met inclusion criteria, 26 of which examined parents or pediatric patients. Parents and children may experience PTG following medical trauma through a combination of cognitive and affective processing of their subjective experience. Components of SPI-PTG are unclear, but may include greater appreciation of life, improved interpersonal relationships, greater personal strength, recognition of new possibilities in one's life course, spiritual or religious growth, and reconstruction of a positive body image. Individual characteristics, and the level of social support, may affect the likelihood that SPI-PTG will occur. SPI-PTG in siblings and other family members has not been well studied. Conclusions: SPI-PTG is an important but understudied and inadequately understood phenomenon affecting children with SPI and their family members. Research should focus on clarifying SPI-PTG domains, creating measurement instruments, assessing SPI-PTG across the pediatric age range and among family members, and improving our understanding of and ability to positively intervene regarding the cognitive processes of rumination, sense making, and benefit finding. [ABSTRACT FROM AUTHOR]

Objective: To investigate whether adolescent siblings of childhood cancer survivors experience posttraumatic stress (PTS).Methods: Participants included 78 adolescent siblings of adolescent cancer survivors who completed self-report measures of anxiety, PTS, and perceptions of the cancer experience.Results: Nearly half (49%) of our sample reported mild PTS and 32% indicated moderate to severe levels. One fourth of siblings thought their brother/sister would die during treatment; over half found the cancer experience scary and difficult. These perceptions were related to PTS. Siblings reported more PTS symptoms than a reference group of nonaffected teens but had similar levels of general anxiety.Conclusions: Levels of PTS are elevated for siblings of childhood cancer survivors. Thus, PTS may be a useful model for understanding siblings' long-term reactions to cancer. Future research and clinical efforts should consider the needs of siblings of childhood cancer survivors in a family context. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To identify and examine demographic variation in estimates of gender-diverse youth (GDY) populations from the PEDSnet learning health system network and the Youth Risk Behavior Survey (YRBS). METHODS: The PEDSnet sample included 14- to 17-years-old patients who had ≥2 encounters at a member institution before March 2022, with at least 1 encounter in the previous 18 months. The YRBS sample included pooled data from 14- to 17-year-old in-school youth from the 2017, 2019, and 2021 survey years. Adjusted logistic regression models tested for associations between demographic characteristics and gender dysphoria (GD) diagnosis (PEDSnet) or selfreported transgender identity (YRBS). RESULTS: The PEDSnet sample included 392 348 patients and the YRBS sample included 270 177 youth. A total of 3453 (0.9%) patients in PEDSnet had a GD diagnosis and 5262 (1.9%) youth in YRBS self-identified as transgender. In PEDSnet, adjusted logistic regression indicated significantly lower likelihood of GD diagnosis among patients whose electronic medical record-reported sex was male and among patients who identified as Asian, Black/African American, and Hispanic/Latino/a/x/e. In contrast, in the YRBS sample, only youth whose sex was male had a lower likelihood of transgender identity. CONCLUSIONS: GDY are underrepresented in health system data, particularly those whose electronic medical record-reported sex is male, and Asian, Black/African American, and Hispanic/Latino/a/x/e youth. Collecting more accurate gender identity information in health systems and surveys may help better understand the health-related needs and experiences of GDY and support the development of targeted interventions to promote more equitable care provision. [ABSTRACT FROM AUTHOR]

BACKGROUND AND OBJECTIVES: Youthwith either autismspectrumdisorder (ASD) or gender dysphoria (GD) alone have also been shown to be at greater risk for mental health (MH) concerns; however, very little research has considered how cooccurring ASD and GD may exacerbate MH concerns. The purpose of this study was to examine associations between ASD, GD, andMH diagnoses (anxiety, depression, eating disorder, suicidality, and self-harm) among US adolescent populations. METHODS: This is a secondary analysis of a large administrative dataset formed by 8 pediatric health system members of the PEDSnet learning health system network. Analyses included descriptive statistics and adjusted mixed logistic regression models testing for associations between combinations of ASD and GD diagnoses andMH diagnoses as recorded in the patient's electronicmedical record. RESULTS: Based on data from 919 898 patients aged 9 to 18 years, adjusted mixed logistic regression indicated significantly greater odds of each MH diagnosis among those with ASD alone, GD alone, and cooccurring ASD/GD diagnoses compared with those with neither diagnosis. Youth with cooccurring ASD/GD were at significantly greater risk of also having anxiety (average predicted probability, 0.75; 95% confidence interval, 0.68-0.81) or depression diagnoses (average predicted probability, 0.33; 95% confidence interval, 0.24-0.43) compared with youth with ASD alone, GD alone, or neither diagnosis. CONCLUSIONS: Youthwith cooccurring ASD/GD aremore likely to also be diagnosedwithMH concerns, particularly anxiety and depression. This study highlights the need to implement developmentally appropriate, gender-affirmingMH services and interventions for youthwith cooccurring ASD/GD. [ABSTRACT FROM AUTHOR]

Posttraumatic stress (PTS) symptoms have been reported in mothers and fathers of childhood cancer survivors; however, little is known about patterns of PTS in these families. Cluster analysis was applied to the Posttraumatic Stress Disorder (PTSD) Reaction Index scores of 98 couples parenting adolescent childhood cancer survivors to describe patterns of PTS in families, yielding the following 5 clusters: Minimal PTS, Mothers Elevated, Disengaged, Fathers Elevated, and Elevated PTS. The clusters were validated using data from a structured psychiatric interview, an additional self-report measure of PTS, and an index of family functioning. These clinically meaningful patterns reveal that a majority of families had at least one parent with moderate to severe PTS, which supports development of family-based interventions for this population. [ABSTRACT FROM AUTHOR]