INTRODUCTION: This study aimed to describe adolescent, parent, and clinician ideas for enhancing adolescent decision-making involvement (DMI) during clinic visits for chronic illness.

METHOD: Adolescents who recently attended a follow-up visit for a chronic illness, their parents, and clinicians were interviewed. Participants completed semistructured interviews; transcripts were coded and analyzed in NVivo. Responses to questions about ideas to increase adolescent DMI were reviewed and sorted into categories and themes.

RESULTS: There were five themes: (1) adolescents need to understand their condition and regimen, (2) adolescents and parents should prepare before the visit, (3) clinicians and adolescents should have one-on-one time, (4) opportunities for condition-specific peer support would be helpful, and (5) clinicians and parents should engage in specific communication behaviors.

DISCUSSION: Findings from this study highlight potential clinician-, parent-, and adolescent-focused strategies for enhancing adolescent DMI. Clinicians, parents, and adolescents may need specific guidance on how to enact new behaviors.

OBJECTIVE: To examine how height and youth as well as parenting characteristics associate with quality of life (QoL) and self-esteem among healthy youth undergoing growth evaluation with growth hormone (GH) testing .

STUDY DESIGN: Healthy youth, age 8-14 years, undergoing provocative GH testing, and a parent completed surveys at or around the time of testing. Surveys collected demographic data; youth and parent reports of youth health-related QoL; youth reports of self-esteem, coping skills, social support, and parental autonomy support; and parent reports of perceived environmental threats and achievement goals for their child. Clinical data were extracted from electronic health records. Univariate models and multivariable linear regressions were used to identify factors associated with QoL and self-esteem.

RESULTS: Sixty youth (mean height Z-score -2.18 ± 0.61) and their parents participated. On multivariable modeling, youth perceptions of their physical QoL associated with higher grade in school, greater friend and classmate support, and older parent age; youth psychosocial QoL with greater friend and classmate support, and with less disengaged coping; and youth height-related QoL and parental perceptions of youth psychosocial QoL with greater classmate support. Youth self-esteem associated with greater classmate support and taller mid-parental height. Youth height was not associated with QoL or self-esteem outcomes in multivariable regression.

CONCLUSIONS: Perceived social support and coping skills, rather than height, were related to QoL and self-esteem in healthy short youth and may serve as an important potential area for clinical intervention.

Recombinant human growth hormone (rhGH) is prescribed to youth with growth hormone deficiency (GHD) to support normal growth and ensure healthy physical development, and to youth without GHD to address height concerns. Perceptions of youth involvement in rhGH treatment decisions have not been explored. This study aimed to examine perceptions of youth and parent roles in decisions around rhGH treatment. Youth (n = 22, 11.5 ± 2.0 years) who had undergone evaluation for short stature and their parents (n = 22) participated in semi-structured interviews after stimulation test results had been received. Interviews revealed the following themes: 1) parent provided youth with support; 2) parent facilitated youth's decision-making involvement; 3) youth had no role or did not remember their role; and 4) youth did not remember conversations with their parents or providers. Parents facilitated their children's involvement by sharing information and seeking their opinions. Whereas some participants described youth as having a substantial decision-making role, not all youth felt they were involved, and some youth could not recall conversations about rhGH. Parents can bolster youth involvement by having conversations using developmentally appropriate language, which is critical to youth feeling empowered and developing efficacy over their own care.

IMPORTANCE: Despite high disease morbidity and mortality and complex treatment decisions, little is known about the medical and end-of-life decision-making preferences of adolescents and young adults (AYA) with advanced heart disease. AYA decision-making involvement is associated with important outcomes in other chronic illness groups.

OBJECTIVE: To characterize decision-making preferences of AYAs with advanced heart disease and their parents and determine factors associated with these preferences.

DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional survey between July 2018 and April 2021 at a single-center heart failure/transplant service at a Midwestern US children's hospital. Participants were AYAs aged 12 to 24 years with heart failure, listed for heart transplantation, or posttransplant with life-limiting complications and a parent/caregiver. Data were analyzed from May 2021 to June 2022.

MAIN OUTCOMES AND MEASURES: Single-item measure of medical decision-making preferences, MyCHATT, and Lyon Family-Centered Advance Care Planning Survey.

RESULTS: Fifty-six of 63 eligible patients enrolled in the study (88.9%) with 53 AYA-parent dyads. Median (IQR) patient age was 17.8 (15.8-19.0) years; 34 (64.2%) patients were male, and 40 patients (75.5%) identified as White and 13 patients (24.5%) identified as members of a racial or ethnic minority group or multiracial. The greatest proportion of AYA participants (24 of 53 participants [45.3%]) indicated a preference for active, patient-led decision-making specific to heart disease management, while the greatest proportion of parents (18 of 51 participants [35.3%]) preferred they and physician(s) make shared medical decisions on behalf of their AYA, representing AYA-parent decision-making discordance (χ2 = 11.7; P = .01). Most AYA participants stated a preference to discuss adverse effects or risks of treatment (46 of 53 participants [86.8%]), procedural and/or surgical details (45 of 53 participants [84.9%]), impact of condition on daily activities (48 of 53 participants [90.6%]), and their prognosis (42 of 53 participants [79.2%]). More than half of AYAs preferred to be involved in end-of-life decisions if very ill (30 of 53 participants [56.6%]). Longer time since cardiac diagnosis (r = 0.32; P = .02) and worse functional status (mean [SD] 4.3 [1.4] in New York Heart Association class III or IV vs 2.8 [1.8] in New York Heart Association class I or II; t-value = 2.7; P = .01) were associated with a preference for more active, patient-led decision-making.

CONCLUSIONS AND RELEVANCE: In this survey study, most AYAs with advanced heart disease favored active roles in medical decision-making. Interventions and educational efforts targeting clinicians, AYAs with heart disease, and their caregivers are needed to ensure they are meeting the decision-making and communication preferences of this patient population with complex disease and treatment courses.

Recombinant human growth hormone (rhGH) is prescribed to youth with growth hormone deficiency (GHD) to support normal growth and ensure healthy physical development, and to youth without GHD to address height concerns. Perceptions of youth involvement in rhGH treatment decisions have not been explored. This study aimed to examine perceptions of youth and parent roles in decisions around rhGH treatment. Youth (n = 22, 11.5 ± 2.0 years) who had undergone evaluation for short stature and their parents (n = 22) participated in semi-structured interviews after stimulation test results had been received. Interviews revealed the following themes: 1) parent provided youth with support; 2) parent facilitated youth's decision-making involvement; 3) youth had no role or did not remember their role; and 4) youth did not remember conversations with their parents or providers. Parents facilitated their children's involvement by sharing information and seeking their opinions. Whereas some participants described youth as having a substantial decision-making role, not all youth felt they were involved, and some youth could not recall conversations about rhGH. Parents can bolster youth involvement by having conversations using developmentally appropriate language, which is critical to youth feeling empowered and developing efficacy over their own care.

OBJECTIVE: Boys outnumber girls in short stature evaluations and growth hormone treatment despite absence of gender differences in short stature prevalence. Family views on short stature influence medical management, but gender-based analysis of these views is lacking. This study explored endocrine patients' and their parents' perceptions of short stature and its impact on quality of life by patient gender.

METHODS: Patients aged 8 to 14 years undergoing provocative growth hormone testing and 1 parent each completed semistructured interviews. Clinical data were extracted by chart review.

RESULTS: Twenty-four patient-parent dyads (6 female patients, 22 mothers; predominantly non-Hispanic White) participated. Six major themes emerged: (1) patients' perceptions of their short stature were similar by gender, (2) physical experiences of short stature were similar by gender, (3) social experiences of short stature were both similar and different by gender, (4) parental perceptions of short stature as a factor limiting their child's functionality were similar by gender, (5) concern about societal stigma related to short stature arose for both genders, and (6) patients' perceptions of parental messaging about the import of their short stature were similar by gender.

CONCLUSION: Our data reveal more similarities than differences between genders in patient perceptions and patient and parent-reported experiences of short stature. Worry about stature-related stigma was noted for patients of both genders. Parental messaging about short stature emerged as an important area to explore further by patient gender. Our findings suggest that clinicians should be wary of making gender or stigma-based assumptions when evaluating children with short stature.

OBJECTIVE: Boys outnumber girls in short stature evaluations and growth hormone treatment despite absence of gender differences in short stature prevalence. Family views on short stature influence medical management, but gender-based analysis of these views is lacking. This study explored endocrine patients' and their parents' perceptions of short stature and its impact on quality of life by patient gender.

METHODS: Patients aged 8-14 years undergoing provocative growth hormone testing and one parent each completed semi-structured interviews. Clinical data were extracted by chart review.

RESULTS: 24 patient-parent dyads (6 female patients, 22 mothers; predominantly non-Hispanic White) participated. Six major themes emerged: 1) patients' perceptions of their short stature were similar by gender, 2) physical experiences of short stature were similar by gender, 3) social experiences of short stature were both similar and different by gender, 4) parental perceptions of short stature as a factor limiting their child's functionality were similar by gender, 5) concern about societal stigma related to short stature arose for both genders, and 6) patients' perceptions of parental messaging about the import of their short stature were similar by gender.

CONCLUSION: Our data reveal more similarities than differences between genders in patient perceptions and patient and parent-reported experiences of short stature. Worry about stature-related stigma was noted for patients of both genders. Parental messaging about short stature emerged as an important area to explore further by patient gender. Our findings suggest that clinicians should be wary of making gender or stigma-based assumptions when evaluating children with short stature.

BACKGROUND: Enrolling children in clinical trials typically requires parental or guardian permission and, when appropriate, child assent. Aligning requirements across jurisdictions would facilitate multisite pediatric trials. Guidance from the International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH) is the best candidate for a global standard but would benefit from additional specification.

METHODS: Ethical analysis of ICH guidance for permission and assent for pediatric trials, with recommendations for clarification.

RESULTS: ICH guidance regarding permission and assent would be enhanced by additional detail in the following areas: (1) what information should be provided to parents, guardians, and children considering a trial, and how that information should be provided; (2) the definition of "assent," the criteria for when assent should be required, and the need to include children in discussions even when assent is not mandated; (3) criteria for requiring children's signatures indicating agreement; (4) greater specificity regarding children's right to decline or withdraw; and (5) clarification of when children's wish to decline or withdraw from participation may be overridden and of what the overriding process should entail.

CONCLUSION: ICH guidance provides a global standard for decision making regarding children's participation in trials. Several clarifications would facilitate the conduct of multinational pediatric research.

IMPACT: Enrolling children in clinical trials requires the permission of a parent/guardian ± the assent of the minor. Differing global regulatory requirements for enrolling children complicate the conduct of multicenter and multinational trials. The authors identify points of ambiguity and/or contradiction in the International Council for Harmonization guidelines and offer recommendations for a common ethical platform for conducting global pediatric research.

<p>In the last decade, there has been a robust increase in research using financial incentives to promote healthy behaviors as behavioral economics and new monitoring technologies have been applied to health behaviors. Most studies of financial incentives on health behaviors have focused on adults, yet many unhealthy adult behaviors have roots in childhood and adolescence. The use of financial incentives is an attractive but controversial strategy in childhood. In this review, we first propose five general considerations in designing and applying incentive interventions to children. These include: (1) the potential impact of incentives on intrinsic motivation, (2) ethical concerns about incentives promoting undue influence, (3) the importance of child neurodevelopmental stage, (4) how incentives interventions may influence health disparities, and (5) how to finance effective programs. We then highlight empirical findings from randomized trials investigating key design features of financial incentive interventions, including framing (loss versus gain), timing (immediate versus delayed), and magnitude (incentive size) effects on a range of childhood behaviors from healthy eating to adherence to glycemic control in type 1 diabetes. Though the current research base on these subjects in children is limited, we found no evidence suggesting that loss-framed incentives perform better than gain-framed incentives in children and isolated studies from healthy food choice experiments support the use of immediate, small incentives versus delayed, larger incentives. Future research on childhood incentives should compare the effectiveness of gain versus loss-framing and focus on which intervention characteristics lead to sustained behavior change and habit formation.</p>

<p><strong>OBJECTIVE: </strong>Adolescents have fewer well-care visits than all other age groups. Males and ethnic minorities are seen least often. We elicited, from Black adolescent males and their parents, key drivers of teen well-care seeking.</p>

<p><strong>METHODS: </strong>We conducted separate semi-structured interviews with Black adolescent males and their parents. We recruited parent-teen dyads from West Philadelphia. Eligible teens were age 13-18, with no complex chronic health conditions. We purposively sampled teens who had not received preventive care in at least two years, some of whom had since returned to care and some not. Interviews were recorded, transcribed, and coded by two coders using the constant comparative method, resolving discrepancies by consensus. Interviews continued until thematic saturation.</p>

<p><strong>RESULTS: </strong>We interviewed 23 Black adolescent males (mean age 15) and 22 parents (20 mothers). Participants understood that teens should routinely receive preventive care. Four themes emerged: receiving preventive care is important to knowing teens are mentally and physically well; remembering to schedule/attend visits is challenging - participants find appointment reminders helpful; mothers noted that males of all ages are generally disengaged from health care; teens and parents felt that a "good" parent ensures teens receive preventive care.</p>

<p><strong>CONCLUSION: </strong>Black adolescent males and their parents value regular preventive care as an opportunity to ensure the teen is physically and mentally well, but competing priorities interfere with care receipt. Results support testing the impact of reminders on receipt of care in this population. These reminders may be most effective if directed at mothers and focused on "good parenting."</p>