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: To develop a patient- and family-centered Aid For Fertility-Related Medical Decisions (AFFRMED) interactive website targeted for transgender and nonbinary (TNB) youth/young adults and their parents to facilitate shared decision-making about fertility preservation interventions through user-centered participatory design.
METHODS: TNB youth/young adults interested in or currently receiving pubertal suppression or gender-affirming hormone treatment and parents of eligible TNB youth/young adults were recruited to participate in a series of iterative human-centered co-design sessions to develop an initial AFFRMED prototype. Subsequently, TNB youth/young adults and parents of TNB youth/young adults were recruited for usability testing interviews, involving measures of usability (i.e., After Scenario Questionnaire, Net Promotor Score, System Usability Scale).
RESULTS: Twenty-seven participants completed 18 iterative co-design sessions and provided feedback on 10 versions of AFFRMED (16 TNB youth/young adults and 11 parents). Nine TNB youth/young adults and six parents completed individual usability testing interviews. Overall, participants rated AFFRMED highly on measures of acceptability, appropriateness, usability, and satisfaction. However, scores varied by treatment cohort, with TNB youth interested in or currently receiving pubertal suppression treatment reporting the lowest usability scores.
CONCLUSIONS: We co-created a youth- and family-centered fertility decision aid prototype that provides education and decision support in an online, interactive format. Future directions include testing the efficacy of the decision aid in improving fertility and fertility preservation knowledge, decisional self-efficacy, and decision satisfaction.

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.

Individuals with asthma experience increased depressive symptoms, which is associated with deleterious health outcomes. No studies have examined depressive symptom trajectories among individuals with asthma despite increased risk. This study expanded prior literature by identifying the following: (1) depressive symptoms trajectories for individuals with and without asthma and (2) predictors of baseline levels and changes in symptoms across time for individuals with asthma.
Adolescents with (N = 965) and without (N = 7,392) asthma self-reported on depressive symptoms (CESD-9) across development. Covariates included: demographics and persistence of asthma. Latent growth curve modeling (LGCM) was used to identify depressive symptom trajectories and their predictors.
A multigroup LCGM identified no significant differences between depressive symptom trajectories of individuals with and without asthma. Depressive symptoms followed a quadratic shape across time for individuals with asthma (Mintercept = 5.73, p < .00; Mlinear = -0.38,p < .001; Mquad = 0.03, p < .001), with a linear deceleration in depressive symptoms during adolescence and an acceleration of symptoms into adulthood. Next predictors of depressive trajectories among individuals with asthma were examined. Female sex (B = 0.58, p < .001), lower parent education (B = -0.57, p < .001), older age (B = 0.19, p < .001), and identifying as Black (B = 0.31, p = .04) were associated with greater baseline depressive symptoms. Older individuals exhibited faster linear symptom decelerations (B = -0.56, p < .001) and faster symptom accelerations (B = 0.73, p < .001). American Indian (AIAN) individuals exhibited faster linear symptom decelerations (B = -1.98, p = .005) and faster quadratic accelerations (B = 3.33, p = .007).
Our results suggest that the depressive symptom trajectories of individuals with asthma are curvilinear and similar to individuals without asthma. When examining predictors of depressive symptom trajectories for those with asthma, socioeconomic disadvantage and racial marginalization were associated with greater baseline depressive symptoms. Although AIAN youth demonstrated more favorable trajectories in adolescence, they also exhibited worse trajectories across young adulthood and adulthood. Findings suggest the need to better understand the impact of multilevel risk and protective factors on depressive symptoms trajectories for individuals with asthma, especially marginalized populations.

To measure the association between problem gambling severity and 19 different gambling activities among emerging adults (aged 16-26).
An online non-probability longitudinal survey collecting data in two waves: wave 1, July/August 2019; wave 2, July/October 2020.
Great Britain PARTICIPANTS: A total of 2080 young adults participating in both waves.
Problem gambling scores were collected using the Problem Gambling Severity Index (PGSI). Binary variables recorded past year participation in 19 different gambling forms, ranging from lotteries to online casino and gambling-like practices within digital games (e.g. loot box purchase, skin betting). Controls included socio-demographic/economic characteristics, the Eysenck Impulsivity Scale and the number of gambling activities undertaken.
Zero inflated negative binomial model lacked evidence of an effect between past year participation in any individual activities and subsequent PGSI scores. However, negative binomial random effects models for current gamblers (n = 497) showed that skin betting (incidence-rate ratio [IRR] = 2.32; 95% CI = 1.69-3.19), fixed odd betting terminals (IRR = 2.21, 95% CI = 1.61-3.05), slot/fruit machines (IRR = 1.43, 95% CI = 1.07-1.91), online betting on horse/dog races (IRR = 1.53, 95% CI = 1.17-2.00) and online betting on non-sports events (IRR = 1.44, 95% CI = 1.11-1.89) were associated with increased PGSI scores. Online casino gambling had a significant interaction by wave; the impact of online casino betting in wave 2 on PGSI scores increased by a factor of 1.61.
Past year participation of young adults (aged 16-26) in certain forms of gambling does not appear to be associated with future Problem Gambling Severity Index scores. Among young adults who are current gamblers, past year participation in certain land-based (e.g. electronic gaming machines) and online forms (e.g. skin betting) of gambling appears to be strongly associated with elevated Problem Gambling Severity Index scores.

Youth with chronic orthostatic intolerance (OI) can experience significant physical, social, and academic functional debilitation. Previous studies have indicated associations among symptom severity, psychosocial factors, and functional disability. However, empirically tested models explaining how different medical and psychosocial factors may contribute to functional disability are lacking. The current cross-sectional study aimed to evaluate mediation, moderation, and additive models of the effect of physical symptoms and psychological distress on functional disability.
One hundred and sixty-five youth (13-22 years old) undergoing medical evaluation of chronic OI symptoms completed measures of autonomic dysfunction symptom severity, depressive and anxiety symptoms, and functional disability. Models were evaluated using tests of indirect effects and linear and logistic regression analyses.
Results supported the mediation and additive effects models for depressive symptoms. Mediation, moderation, and additive models for hypothesized effects of anxiety symptoms were not supported.
Results provide preliminary support for models in which OI symptoms affect functional debility via their effects on mood and in which depressive symptoms have unique and additive effects on functioning. Findings lay the foundation for longitudinal and experimental evaluation of biopsychosocial models of functional disability in youth with chronic OI and related conditions. Implications include the importance of a biopsychosocial conceptualization of OI symptoms and debility as a complex interplay of factors rather than as a purely physiological or psychological process.

The interplay and longitudinal associations between positive and negative illness-related experiences in childhood cancer survivors and their families remain unclear. Therefore, benefit finding, cancer-related worries, depressive symptoms, and life satisfaction were prospectively investigated in childhood cancer survivors and parents. Directionality of effects and interactions between benefit finding and cancer-related worries in predicting general well-being were examined.
Childhood cancer survivors (n = 125 at T1; aged 14-25), mothers (n = 133 at T1), and fathers (n = 91 at T1) completed two annual questionnaires on benefit finding, cancer-related worries, depressive symptoms, and life satisfaction. Cross-lagged panel analyses including benefit finding, cancer-related worries, their interaction, and depressive symptoms or life satisfaction were conducted in survivors, mothers, and fathers.
Relatively high stability coefficients were found for all study variables. In survivors, cancer-related worries predicted relative increases in depressive symptoms and benefit finding over time. Benefit finding predicted relative increases in life satisfaction over time and buffered negative effects of cancer-related worries on life satisfaction. In mothers and fathers, positive correlated change at T2 (the correlation between residuals at T2) indicated that relative change in benefit finding over time was positively related to relative change in cancer-related worries.
Benefit finding was related both to positive well-being and negative illness experiences, which calls for more research to unravel the different functions of benefit finding over time. Clinicians should be encouraged to attend to positive illness experiences along with more negative ones to obtain a more nuanced view on the illness experiences of survivors and their families.

OBJECTIVE: Adolescents and young adults in the college setting often report poor sleep hygiene and quality. These sleep difficulties may be related to emotion dysregulation, which is highly relevant to broader adjustment. The current study aimed to empirically identify latent groups of healthy college students with distinct subjective sleep patterns and examine differences in emotion dysregulation between subgroups.
METHODS: College students (N = 476; Mage=19.38) completed the Adolescent Sleep-Wake Scale-Revised, Adolescent Sleep Hygiene Scale-Revised, and Difficulties in Emotion Dysregulation Scale. Most participants were White (78%), non-Hispanic/Latinx (85%), and female (77%). Latent profile analysis identified patterns of sleep with maximum likelihood estimation. Bolck-Croon-Hagenaars procedure evaluated differences in emotion dysregulation by class.
RESULTS: A three-class model had optimal fit, Bayesian information criterion = 11,577.001, Bootstrapped Parametric Likelihood Ratio Test = -5,763.042, p < .001, entropy = .815. The three profiles identified were good sleep (overall high sleep quality and hygiene; n = 219), moderate sleep (low sleep quality with mix of low and high sleep hygiene; n = 221), and poor sleep (very low sleep quality and hygiene; n = 36). Those in the good sleep group (M = 68.06, SE = 1.5) reported significantly less emotion dysregulation than the moderate sleep group (M = 92.12, SE = 1.67; X2(2) = 98.34, p = .001) and the poor sleep group (M = 99.51, SE = 4.10; p < .001). The moderate and poor sleep groups did not significantly differ, X2(2) = 2.60, p = .11.
CONCLUSIONS: Emotion dysregulation differed across three sleep profiles, with participants classified in the good sleep group reporting, on average, the lowest emotion dysregulation, compared to the moderate and poor sleep groups. These findings highlight contextual factors of sleep that may be clinically targeted to promote emotion regulation.

This study examined the impact of the COVID-19 pandemic on a national sample of adolescents and young adults (AYA) with spina bifida (SB) and parents of youth with SB.
AYA with SB (15-25; n = 298) and parents of children with SB (n = 200) were recruited to complete an anonymous, online survey in English or Spanish. Participants provided information about demographic and condition characteristics, as well as their technology access and use for behavioral health care. They also completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which includes Exposure, Impact, and Distress subscales. Exploratory correlations and t-tests were used to examine potential associations between CEFIS scores and demographic, medical, and access characteristics. Qualitative data from the CEFIS were analyzed using thematic analysis.
Scores on the Exposure, Impact, and Distress subscales demonstrated significant variability. Demographic associations with Exposure differed for those with higher Impact and Distress (e.g., White, non-Hispanic/Latino AYA reported higher rates of exposure [p = .001]; AYA who identified with a minoritized racial/ethnic identity reported greater impact [p ≤ .03]). Impacts to mental and behavioral health (n = 44), interference with medical care (n = 28), and interpersonal challenges (n = 27) were the most commonly occurring qualitative themes.
The current findings implicate differential impacts to individuals with SB and their families based on demographic, medical, and systemic factors (e.g., minoritized status). Recommendations to support families with SB and other pediatric conditions are made.

To investigate the relationships between diabetes-specific family conflict and health outcomes of young people with type 1 diabetes (T1D).
A systematic review was performed according to the PRISMA statement (registration number: CRD42020164988). PubMed, Embase, PsycNET, reference lists of included studies, and other relevant reviews were searched (1990-2020). Two independent reviewers screened titles, abstracts, and full-texts. Studies were included if they sampled young people with T1D (mean age between 14 and 25 years) and examined the relationship between diabetes-specific family conflict and the following outcomes: glycated hemoglobin (HbA1c), treatment adherence, blood glucose monitoring, depression, anxiety, quality of life, and/or well-being.
A total of 20 studies met the predetermined inclusion criteria. Greater diabetes-specific family conflict was significantly related to higher HbA1c values in 17 studies. Seven studies reported a significant association between greater diabetes family conflict and suboptimal treatment adherence and/or less frequent blood glucose monitoring. However, significant relationships between conflict and HbA1c and/or treatment adherence were not found in four studies. Seven studies in total reported that greater diabetes family conflict was significantly related to poorer quality of life or well-being and greater depressive and/or anxiety symptoms in young people.
Diabetes-specific family conflict is associated with some adverse health outcomes for young people with T1D. However, more longitudinal studies of young people aged older than 16 years are needed. Screening for and addressing diabetes-specific family conflict is recommended, given the growing number of studies linking family conflict to various adverse health outcomes in young people with T1D.