Associations of Impulsivity and Risky Decision-Making with E-Cigarette-Related Outcomes Among Adolescents with Congenital Heart Disease: Variable- and Person-Oriented Approaches.

Adolescents with congenital heart disease (CHD) have elevated risk for acquired cardiovascular complications, increasing their vulnerability to e-cigarette-related health harms. Impulsivity and risky decision-making have been associated with adolescent substance use, but the relationships between these factors and e-cigarette-related outcomes among cardiovascular at-risk adolescents with CHD are unknown. This cross-sectional study aimed to (a) determine the associations of impulsivity and risky decision-making with e-cigarette-related outcomes (i.e. susceptibility, ever use, perceptions of harm and addictiveness) via variable-oriented analysis (logistic regression), (b) identify groups of adolescents with similar profiles of impulsivity and risky decision-making via exploratory person-oriented analysis (latent profile analysis; LPA), and (c) examine differences on e-cigarette-related outcomes between profile groups. Adolescents aged 12 to 18 years with CHD (N = 98) completed a survey assessing impulsivity facets (Short UPPS-P) and e-cigarette-related outcomes and were administered a risky decision-making task (Iowa Gambling Task, Version 2; IGT2). In variable-oriented analyses, impulsivity facets (negative urgency, positive urgency, lack of premeditation) but not risky decision-making were associated with e-cigarette susceptibility and ever use. The exploratory LPA identified two groups with similar patterns of responding on the Short UPPS-P and IGT2 labeled "Low Impulsivity" and "High Impulsivity," which were primarily characterized by significant differences in negative and positive urgency. Adolescents in the High Impulsivity group had increased odds of e-cigarette susceptibility but not ever use compared to the Low Impulsivity group. This work indicates that strategies to prevent e-cigarette use among adolescents with CHD may be enhanced by addressing impulsivity, particularly negative and positive urgency.

The Association of Global and Disease-Related Stress With Susceptibility to and Use of E-Cigarettes and Marijuana Among Adolescents With Congenital Heart Disease.

OBJECTIVE: Adolescents with congenital heart disease (CHD) are exposed to disease-related stressors and have elevated risk for cardiovascular and cognitive complications that are exacerbated by e-cigarettes and marijuana. The aims of this cross-sectional study are to: (1) identify the association between perceived global and disease-related stress and susceptibility to e-cigarettes and marijuana, (2) determine if the association between stress and susceptibility differs by gender, and (3) explore the association between stress and ever use of e-cigarettes and marijuana among adolescents with CHD. METHODS: Adolescents with CHD (N = 98; aged 12-18 years) completed self-report measures of susceptibility to/ever use of e-cigarettes and marijuana and global and disease-related stress. RESULTS: Susceptibility to e-cigarettes and marijuana was reported by 31.3% and 40.2% of adolescents, respectively. Ever use of e-cigarettes and marijuana was reported by 15.3% and 14.3% of adolescents, respectively. Global stress was associated with susceptibility to and ever use of e-cigarettes and marijuana. Disease-related stress was associated with susceptibility to marijuana. Females reported more global and disease-related stress than males, but the association of stress with susceptibility to e-cigarettes and marijuana did not differ by gender. CONCLUSIONS: Susceptibility to e-cigarettes and marijuana is common among adolescents with CHD and is associated with stress. Future work to examine the longitudinal associations between susceptibility, stress, and use of e-cigarettes and marijuana is warranted. Global stress may be an important consideration in the development of strategies to prevent these risky health behaviors among adolescents with CHD.

Surgical experiences in adolescents and young adults with differences of sex development: A qualitative examination.

BACKGROUND: Surgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades. OBJECTIVE: The purpose of the current study is to provide an updated and empirical qualitative examination of the surgical experiences and responses to care of adolescents and young adults (AYA) with DSD in order to fill this gap in the literature and inform patient care. METHODS: Qualitative interviews were conducted with 37 AYA (ages 12-26) with DSD. Interviews were transcribed, coded, and analyzed thematically. RESULTS: Three major themes were identified: 1) knowledge related to surgery; 2) surgical and medical experience; and 3) psychosocial factors related to surgery. Results demonstrated that most AYA were not involved in the decision to pursue surgery and were observed to have varying levels of knowledge regarding their surgeries. Most participants in the current study had received a DSD-related surgery and the majority described having positive surgical experiences and few regrets. Nonetheless, AYA described both medical and psychosocial challenges related to their surgeries and recoveries and offered feedback on ways to improve the surgical process. DISCUSSION: The current study provides a qualitative examination of the surgical experiences of 37 AYA with DSD. Findings highlight the importance of regular and ongoing communication with providers to improve knowledge related to surgery during the decision-making process as well as after surgical intervention. Results underscore the benefits of multidisciplinary teams and the value of patient handouts and decision aids in assisting AYA in the decision to pursue surgical intervention. Other specific recommendations for providers include increased patient privacy during genital exams, greater emphasis on psychoeducation and pain management strategies, and the use of behavioral health services to assist with challenges and social support. CONCLUSIONS: The decision to pursue surgical intervention in youth with DSD remains a complex and controversial issue, and more information regarding patients' perspectives on surgery is needed. The current study provides novel insights into patient experiences of surgical intervention and highlights the need for psychosocial support throughout the shared decision-making process.

Study protocol for fertility preservation discussions and decisions: A family-centered psychoeducational intervention for male adolescents and emerging adults newly diagnosed with cancer and their families.

Many childhood cancer survivors desire biological children but are at risk for infertility after treatment. One option for mitigating risk is the use of fertility preservation prior to gonadotoxic therapy. Adolescents and emerging adults may rely on their parents to help them decide whether to use fertility preservation. While this is often a collaborative process, it is currently unknown how parents can optimally support adolescents and emerging adults through this decision. To address this gap, we developed a family-centered, psychoeducational intervention to prompt adolescents and emerging adults to reflect on their future parenthood goals and attitudes towards fertility preservation, as well as to prompt their parents (or other caregivers) to reflect on their own and their child's perspectives on the topic. In this randomized controlled trial, families will be randomized to either the standard of care control group (fertility consult) or the intervention group. After their fertility consult, adolescents and emerging adults and parents in the intervention group will complete a fertility preservation values clarification tool and then participate in a guided conversation about their responses and the fertility preservation decision. The primary expected outcome of this study is that participation in the intervention will increase the use of fertility preservation. The secondary expected outcome is an improvement in decision quality. Chi-square analyses and t-tests will evaluate primary and secondary outcomes. The goal of this intervention is to optimize family-centered fertility preservation decision-making in the context of a new cancer diagnosis to help male adolescents and emerging adults achieve their future parenthood goals.

Controlling contamination in child maltreatment research: Impact on effect size estimates for child behavior problems measured throughout childhood and adolescence.

Contamination, when members of a comparison or control condition are exposed to the event or intervention under scientific investigation, is a methodological phenomenon that downwardly biases the magnitude of effect size estimates. This study tested a novel approach for controlling contamination in observational child maltreatment research. Data from The Longitudinal Studies of Child Abuse and Neglect (LONGSCAN; N = 1354) were obtained to estimate the risk of confirmed child maltreatment on trajectories of internalizing and externalizing behaviors before and after controlling contamination. Baseline models, where contamination was uncontrolled, demonstrated a risk for greater internalizing (b = .29, p < .001, d = .40) and externalizing (b = .14, p = .040, d = .19) behavior trajectories. Final models, where contamination was controlled by separating the comparison condition into subgroups that did or did not self-report maltreatment, also demonstrated risks for greater internalizing (b = .37, p < .001, d = .51) and externalizing (b = .22, p = .028, d = .29) behavior trajectories. However, effect size estimates in final models were 27.5%-52.6% larger compared to baseline models. Controlling contamination in child maltreatment research can strengthen effect size estimates for child behavior problems, aiding future child maltreatment research design and analysis.

Gender Differences in Physical Activity Engagement Among Adolescents With Congenital Heart Disease.

OBJECTIVE: The current study aimed to (a) describe moderate-to-vigorous physical activity (MVPA), sedentary behavior (SB), and cardiorespiratory fitness (VO2Peak) via objective assessment among adolescents with congenital heart disease (CHD), (b) examine gender differences on MVPA, SB, VO2Peak, and the Theory of Planned Behavior elements, and (c) identify whether gender moderates the relationships between the Theory of Planned Behavior elements and MVPA, SB, and VO2Peak. METHODS: Adolescent CHD survivors (N = 86; ages 15-18 years) wore an accelerometer to assess MVPA and SB, underwent an exercise stress test to assess VO2Peak, and completed a survey of the Theory of Planned Behavior elements as measured by perceived benefits (attitudes), family/friend support and perceived norms (social norms), and self-efficacy and barriers (perceived behavioral control) to engaging in physical activity. RESULTS: On average, CHD survivors engaged in 22.3 min (SD = 15.3) of MVPA/day and 9 hr of SB/day (M = 565.8, SD = 102.5 min). Females engaged in less MVPA but not more SB had a lower mean VO2Peak, reported lower self-efficacy, and perceived greater barriers than males. In a regression model, barriers explained unique variance in MVPA and VO2Peak, but the relationship between barriers and MVPA/VO2Peak did not vary by gender. Self-efficacy did not explain unique variance in MVPA and VO2Peak when included in a model with gender and barriers. CONCLUSIONS: Family/friend support for physical activity engagement may be an important consideration when developing physical activity interventions for adolescent CHD survivors. The role of gender differences in self-efficacy and perceived barriers on physical activity engagement warrants further investigation.

The impact of CNS-directed treatment on quality of life in childhood cancer survivors.

PURPOSE: Pediatric cancer survivors may have lower quality of life (QoL), but most research has assessed outcomes either in treatment or long-term survivorship. We focused on early survivorship (i.e., 3 and 5 years post-diagnosis), examining the impact of CNS-directed treatment on child QoL, as well as sex and age at diagnosis as potential moderators. METHODS: Families of children with cancer (ages 5-17) were recruited at diagnosis or relapse (N = 336). Survivors completed the PedsQL at 3 (n = 96) and 5 years (n = 108), along with mothers (101 and 105, respectively) and fathers (45 and 53, respectively). The impact of CNS treatment, sex, and age at diagnosis on child QoL was examined over both time since diagnosis and time since last treatment using mixed model analyses. RESULTS: Parent-report of the child's total QoL was in the normative range and stable between 3 and 5 years when examining time since diagnosis, while child reported QoL improved over time (p = 0.04). In terms of time since last treatment, mother and child both reported the child's QoL improved over time (p = 0.0002 and p = 0.0006, respectively). Based on parent-report, males with CNS-directed treatment had lower total QoL than females and males who did not receive CNS-directed treatment. Age at diagnosis did not moderate the impact of treatment type on total QoL. CONCLUSIONS: Quality of life (QoL) in early survivorship may be low among males who received CNS-directed treatment. However, this was only evident on parent-report. Interventions to improve child QoL should focus on male survivors who received CNS-directed treatment, as well as females regardless of treatment type.

A Randomized Clinical Trial Demonstrating Feasibility and Preliminary Efficacy of a Videoconference-Delivered Physical Activity Lifestyle Intervention Among Adolescents With a Congenital Heart Defect.

BACKGROUND: Individuals with congenital heart defects are at increased risk for developing further cardiovascular complications, which can be mitigated by increasing physical activity. Given that positive health behaviors begin declining during older adolescence, it is vital to promote lifestyle changes in this population. PURPOSE: The current study aims to (a) determine the feasibility/acceptability of the Congenital Heart Disease Physical Activity Lifestyle (CHD-PAL) intervention among adolescents (ages 15-18) with moderate and complex congenital heart defects, and (b) estimate the preliminary efficacy of CHD-PAL for increasing time spent in moderate-to-vigorous physical activity (MVPA) and cardiorespiratory fitness and decreasing sedentary behavior. METHODS: Eligible participants were randomized into either CHD-PAL (eight 30-min videoconferencing sessions over 20 weeks with an interventionist + Fitbit + exercise prescription) or a comparator (Fitbit + exercise prescription). RESULTS: Sixty adolescents were randomized (76% recruitment rate; 94% of participants were retained from baseline to follow-up). Most adolescents (73%) and their parents/guardians (76%) reported that the trial was enjoyable. While there was no effect of arm on change in MVPA, sedentary behavior, or cardiorespiratory fitness for the entire sample, among those who engaged in <21 min of MVPA on average at baseline, adolescents in the CHD-PAL intervention had an increase of 16 min/day of MVPA more than comparators (d = 0.90). CONCLUSIONS: The CHD-PAL intervention warrants examination in a larger trial to establish efficacy among those adolescents with a congenital heart defect who engage in <21 min of MVPA/day and should include follow-up assessments to examine effect durability. CLINICAL TRIALS REGISTRATION: NCT03335475.

Medical responsibility growth in youth with spina bifida: Neuropsychological and parenting predictors.

OBJECTIVE: For youth with spina bifida (SB) there is a growing need to understand how responsibilities for health care are transferred from family- to self-management over time. The current study examined trajectories of responsibility for medical tasks in youth with SB across adolescence, as well as executive functioning/attention and parenting behaviors as predictors of growth. METHOD: As part of a larger, longitudinal study, 140 youth with SB (ages 8-15 at time 1; Mage = 11.43) reported on their responsibility for relevant medical tasks across five time points. Attention and executive functioning were assessed via performance-based and parent/teacher-report methods. Parenting behaviors consisted of acceptance, behavioral control, and psychological control and were assessed via observational and parent-report. RESULTS: Growth curve analyses revealed significant increases in youth medical responsibility across all SB tasks over time. Attention, executive functioning, maternal behavioral control, and paternal psychological control emerged as predictors of growth parameters in responsibility for communicating about SB and managing health care appointments. CONCLUSION: Results indicated that youth with SB obtain increasing responsibility for their health care over time. The transfer of responsibility for SB management may differ based on individual (i.e., the child's neuropsychological abilities) and family level (i.e., parenting behaviors) factors. Further research is needed to understand how growth in medical responsibility relates to changes in other aspects of SB self-management across development, such as medical adherence. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Impact of central nervous system-directed treatment on competence and adjustment among children in early cancer survivorship.

BACKGROUND: Central nervous system (CNS)-directed treatments can cause long-term academic, social, and emotional difficulties for children with cancer. However, limited research has examined the emergence of problems longitudinally and has often stratified risk by diagnosis alone. Therefore, this study compared competence and adjustment in children, who did and did not receive CNS-directed treatment, over the first 3 years following a cancer diagnosis. PROCEDURE: Mothers, fathers, and children (ages 5-18 years at diagnosis) from 217 families reported on the child's competence (academic, social) and adjustment (anxious/depressed, withdrawn/depressed) near a new cancer diagnosis or relapse and 3 years later. Children were categorized into CNS-directed treatment (n = 112; including cranial radiation, intrathecal chemotherapy, and/or neurosurgery) and non-CNS-directed treatment (n = 105) groups. RESULTS: At enrollment, there were few differences in competence and emotional adjustment among children based on treatment or diagnostic group. At 3 years, mothers and fathers reported poorer social competence for the CNS-directed treatment group, and fathers reported poorer school competence for the CNS-directed treatment group. Over time, father ratings of social competence increased for the non-CNS-directed treatment group, but not the CNS-directed treatment group. While father ratings of academic competence declined for the CNS-directed treatment group, mother ratings declined the most for children diagnosed with a brain tumor. All children demonstrated higher anxious/depressed scores over time. CONCLUSIONS: CNS-directed treatment may be a valuable indicator to identify childhood cancer survivors at risk for poor competence during early survivorship. Follow-up screening and supportive services are recommended, as well as additional longitudinal research.

Clinical risk factors, emotional reactivity/regulation and suicidal ideation in elementary school-aged children.

OBJECTIVE: Suicidal behavior (SB) in young children is rare yet in 2019, suicide was the fifth leading cause of death in 5-12-year-old youth. Understanding the risks associated with childhood suicidal ideation (SI) and SB will determine which factors should be targeted for prevention programming. This study examined clinical characteristics and emotional reactivity/regulation (ERR) in children with (SI+) and without (SI-) SI. METHOD: One hundred seventeen children, 6-9 years, and one biological parent were enrolled. Children completed interviews concerning SI/SB and parents completed interviews/self-reports about SI/SB, psychiatric distress, and history of abuse/neglect and their child's SI/SB, mental health, and ERR. Independent t-tests and Chi-square analyses using Bonferroni correction were conducted to examine SI group differences. Variables were then screened using forward stepwise logistic regression to determine association with SI + status. The final logistic regression included variables that survived screening procedures only. RESULTS: Univariate analyses revealed SI + children were more likely to have a parental history of suicide attempt (PH+), higher rates of current psychotropic medication use, higher scores on the CBCL-DSM oriented scales (e.g., ADHD problems), and higher negative affect compared to SI- children. After analytic screening procedures, PH+, anxiety problems, ADHD problems, and anger survived. The final logistic regression revealed PH + status and anxiety problems were associated with SI + status. CONCLUSION: Long-term follow-up is needed to determine if these factors are predictive of a first-time suicide attempt in this at-risk group.

[Formula: see text]Neurocognitive predictors of adaptive functioning trajectories among youth with spina bifida.

Little is known about how youth with spina bifida (SB) acquire adaptive functioning skills across development. Therefore, the current study examined: (1) trajectories of adaptive functioning in youth with SB as they transitioned from childhood into adolescence, and (2) neuropsychological functioning as a potential risk factor for long-term adaptive functioning difficulties. Participants (n = 131 youth with SB) were recruited as part of a larger ongoing longitudinal study. Growth curves were used to examine changes over time across six adaptive functioning skills: communication, self-direction, functional academics, social, self-care, and home living skills. Additionally, youth's attention and executive functioning (i.e., working memory, planning/organizational skills, cognitive flexibility, inhibition) were assessed via questionnaires and performance-based assessments, and entered as predictors in the models. Youth's communication, self-direction, functional academics, self-care, and home living skills increased over time across age, whereas youth's social skills did not. Scaled scores for youth's social, communication, self-direction, and functional academics skills were generally within normal limits, whereas those for self-care and home living skills fell in the borderline range. Better attention and executive functioning predicted a higher intercept for many adaptive functioning abilities at 11.5 years old, above and beyond the influence of IQ. However, these variables did not predict growth in adaptive functioning. Results indicate that youth with SB acquire skills across development to better meet the demands of daily life. However, youth with poorer neurocognitive functioning may demonstrate adaptive functioning deficits in early childhood and benefit from timely intervention.

Longitudinal understanding of prognosis among adolescents with cancer.

OBJECTIVE: Despite calls to increase prognosis communication for adolescents with cancer, limited research has examined their perceptions of prognosis as compared with their parents. We assessed adolescents' understanding of their prognosis relative to parents and oncologists. METHODS: Families of adolescents (aged 10-17) were recruited at two pediatric institutions following a new diagnosis or relapse. Seventy-four adolescents, 68 mothers, and 40 fathers participated at enrollment; 76 adolescents, 69 mothers, and 35 fathers participated one year later. The adolescent's primary oncologist reported on prognosis only at enrollment. Participants rated the likelihood of the adolescent's survival in five years, as well as reporting prognosis communication and sources of information. RESULTS: Most oncologists (65%) and fathers (63%) discussed prognosis in numerical terms with the adolescent at baseline, which was greater than mother report (49%) of discussions of numerical prognosis with adolescents. Adolescents reported a better prognosis than oncologists, but comparable with mothers at diagnosis and one year. Adolescents' prognosis estimates were stable over time (P > .05). At diagnosis, adolescent-father (P = 0.025) and adolescent-oncologist (P < 0.001) discrepancies were larger for youth with advanced than non-advanced cancer. Adolescents whose parents received numerical prognosis estimates from the oncologist, and whose fathers reported providing numerical prognosis estimates had more accurate understandings of prognosis (P < 0.05). CONCLUSIONS: Adolescent prognosis estimates were comparable with those of parents at diagnosis and one year but more favorable than that of oncologists. Although additional research is needed, results suggest discrepancies in prognosis estimates between family members and oncologists, particularly for adolescents with advanced cancer.

Validation of the Second Victim Experience and Support Tool-Revised in the Neonatal Intensive Care Unit.

OBJECTIVE: The aim of the study was to validate a revised version of the Second Victim Experience and Support Tool (SVEST-R). The SVEST survey instrument was developed to measure the emotional and professional impact of medical errors and adverse patient events on healthcare providers and can help healthcare organizations evaluate the effectiveness of support resources. METHODS: An SVEST-R was completed by 316 healthcare providers from seven neonatal intensive care units affiliated with a large, pediatric hospital. The original 29-item measure was expanded to 43 items to assess eight psychosocial domains (psychological distress, physical distress, colleague support, supervisor support, institutional support, nonwork-related support, professional self-efficacy, resilience) and two employment-related domains (turnover intentions, absenteeism) associated with the second victim experience. Seven additional items assessed desired forms of support (e.g., time away from the unit). A confirmatory factor analysis evaluated the factor structure of the modified measure. RESULTS: The initial confirmatory factor analysis did not reveal an acceptable factor structure; thus, eight items were removed because of inadequate factor loadings or for conceptual reasons. This resulted in an acceptable model for the final 35-item measure. The final version included nine factors (i.e., psychological distress, physical distress, colleague support, supervisor support, institutional support, professional self-efficacy, resilience, turnover intentions, and absenteeism), with Cronbach α ranging from 0.66 to 0.86. CONCLUSIONS: The SVEST-R is a valid measure for assessing the impact of errors or adverse events on healthcare providers. Importantly, the SVEST-R now includes positive outcomes (i.e., resilience) that may result from the second victim experience.

Health-Related Quality of Life Declines Over 3 Years for Congenital Heart Disease Survivors.

BACKGROUND: Because of medical advancements, many congenital heart disease (CHD) survivors are relatively symptom-free until adulthood, at which time complications may occur. Worsening health status likely drives a change in patient-reported outcomes, such as health-related quality of life (HRQoL), although change in HRQoL has not been investigated among adolescent and young adult CHD survivors. OBJECTIVE: The aims of the current mixed cross-sectional and longitudinal study were to (1) examine changes in HRQoL over 3 years and (2) identify any demographic (age, sex, estimated family income, and distance from medical center) and medical predictors (functional status and number of cardiac-related medications) of that change. METHODS: Baseline and 3-year follow-up data were obtained via an online survey of 172 CHD survivors (15-39 years old at baseline; 25% simple, 45% moderate, 30% complex) recruited from a pediatric hospital and an adult hospital. Medical predictors were abstracted from electronic medical records. RESULTS: After controlling for New York Heart Association functional class, mixed-effects models identified significant declines in all subscales of the Research and Development Corporation 36-Item Health Survey 1.0 across the 3-year timeframe. A lower estimated family income (≤$35 000) predicted more decline in physical functioning (b = 0.5, 95% confidence interval, 0.2-0.8; P = .001) and emotional functioning (b = 0.3, 95% confidence interval, 0.1-0.5; P = .017). No other significant demographic or medical predictors were identified. CONCLUSIONS: Study findings highlight the importance of tracking patient-reported outcomes over time, suggesting that medical staff should discuss HRQoL with CHD survivors during late adolescence and early adulthood before decline.

Perceived Infant Well-Being and Self-Reported Distress in Neonatal Nurses.

BACKGROUND: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research examining nurse perceptions of infant well-being (symptoms, suffering, and quality of life [QOL]) and associations with nurse distress. OBJECTIVE: The objective of this descriptive study was to explore associations between nurse perceptions of infant well-being and self-reported distress. METHODS: Nurses caring for infants with potentially life-threatening/life-limiting conditions were recruited from a Level IV NICU in the Midwestern United States as a part of a study on infant symptom burden. Nurses reported their perceptions of infant well-being and their own distress on a 5-point Likert scale. Surveys were administered at the bedside weekly for up to 12 weeks, depending on length of stay. Infant suffering and QOL were examined in relation to nurse distress. A cross-classified multilevel model was used to account for dependence within nurse and within patient. RESULTS: A total of 593 surveys were collected from nurses. Using a cross-classified multilevel model with variables entered simultaneously, nurse perceptions of greater infant suffering and lower infant QOL were significantly associated with greater nurse distress. DISCUSSION: Preliminary evidence shows that greater perceived infant suffering and lower perceived infant QOL may be associated with greater levels of self-reported distress in NICU nurses. Further work is needed to better understand factors related to symptom management in the NICU and the potential role of caregiver distress and compassion fatigue in NICU nurses.

Diabetes-Related Emotional Distress Over Time.

BACKGROUND AND OBJECTIVES: Many adolescents with type 1 diabetes experience diabetes-related distress (DRD; the negative emotional reactions specific to managing diabetes), but most research on DRD among adolescents relies on cross-sectional data. We assess adolescents' longitudinal DRD patterns and predictors of chronic DRD. METHODS: This secondary analysis of data from a depression prevention clinical trial included 264 adolescents with type 1 diabetes randomly assigned to a resilience or education intervention (mean age: 15.7 ± 1.1 years; 59.8% female). Youth reported their DRD at 5 assessments over 16 months. Using latent class growth analysis, we classified adolescents into trajectory groups according to baseline starting point (intercept) and rate of change (slope) of DRD. We examined bivariate associations between trajectory group membership and demographic and clinical factors. Baseline predictors of chronic DRD were assessed via multiple logistic regression. RESULTS: Participants were classified into 4 groups: stable high DRD (7.2%; high intercept, flat slope), stable moderate DRD (28.0%; above-average intercept, flat slope), improving DRD (33.7%; average intercept, downward slope), and low DRD (31.1%; below-average intercept, downward slope). Lower hemoglobin A1c, greater adherence, fewer socioemotional difficulties, and more adaptive coping distinguished the improving and low DRD trajectories. Chronic DRD patterns were associated with female sex and higher depressive symptoms and hemoglobin A1c. CONCLUSIONS: In this study of adolescents' DRD trajectories during and after a psychoeducational intervention, one-third of youth were classified as having chronic, elevated DRD. Links with multiple clinical factors support efforts for routine DRD screening and comprehensive interventions for distressed youth.

Congruence of Reproductive Goals and Fertility-Related Attitudes of Adolescent and Young Adult Males and Their Parents After Cancer Treatment.

Purpose: Approximately half of all males experience fertility impairment after cancer treatment, which can diminish quality of life. Parents are often responsible for sharing health-related information, and parental recommendation strongly impacts fertility-related decisions; yet it remains unclear whether adolescents and young adults' (AYAs) and their parents' fertility-related goals/attitudes align. This study examined parent-AYAs congruence on fertility-related attitudes and (grand) parenthood goals during survivorship, and if parents were aware of their sons' parenthood goals and reproductive concerns. Methods: Males (15-25 years) and their parents were recruited within 1-8 years of completing cancer treatment. Based on the Health Belief Model, AYAs (N = 38), mothers (N = 33), and fathers (N = 24) reported on parenthood goals, perceived benefits/barriers of fertility testing/preservation, perceived susceptibility/severity of infertility, and fertility knowledge. Analyses included Pearson's correlations and paired-sample t-tests. Results: More than 80% of mothers, fathers, and AYAs desired future (grand) children. Mother-son dyads had differences in fertility knowledge (p = 0.037), and father-son dyads differed in parenthood goals (p = 0.024). AYAs perceived more fertility-related barriers than their mothers (p = 0.014) and fathers (p = 0.006). AYA survivors were less likely to report they could accept a life without a biological child compared with their mothers (p = 0.009) and fathers (p = 0.024). Conclusions: These findings suggest some similarities, yet important differences between male AYA survivors' and their parents' attitudes toward fertility and parenthood. As infertility is common in this population, and is associated with uncertainty and distress, these findings underscore the need for family-centered fertility-related interventions at the time of cancer diagnosis and throughout survivorship.

Friendship Quality Over Time in Youth With Spina Bifida Compared to Peers.

OBJECTIVE: Examine friendship qualities (i.e., control, prosocial skills, positive affect, support, companionship, conflict, help, security, and closeness) and perceived self-efficacy in friendships of children with spina bifida (SB) and chosen peers over time through observed behaviors and self-report. METHODS: Families of children with SB (aged 8-15) were asked to invite the child's "best friend" to participate in-home assessment visits; 127 friendship dyads were included in the current study. Mixed-effects models were used to examine children with SB and their peers across age on observed behaviors and self-reported data about their friendships. RESULTS: For observed behaviors, peers displayed more control (p = .002) and prosocial behaviors (p = .007) with age than youth with SB. Male peers displayed higher control in their interactions as they aged (p = .04); and males with SB maintained their level of prosocial behaviors with age, compared to an increase in prosocial behaviors with age for all other groups (p = .003). For self-reported data, there was no evidence to suggest significant differences in friendship qualities across age (ps ≥ .2), with the exception of increased help (p = .002). Female peers reported increases in companionship across age compared to the other groups (p = .04). CONCLUSIONS: Differing from previous examinations of social characteristics in SB, most longitudinal trends in friendship qualities did not differ for youth with SB compared to their peers. Promotion of this existing social strength may be a key intervention target for future strategies that promote positive outcomes for youth with SB.

Interest in Learning About Fertility Status Among Male Adolescent and Young Adult Survivors of Childhood Cancer.

PURPOSE: As many as two-thirds of male childhood cancer survivors are at risk for fertility impairment as a consequence of treatment. Despite this, survivorship guidelines lack concrete recommendations as to when fertility status conversations should happen between patients and providers and what should be discussed. Thus, conversations may be inconsistent, or do not occur at all in survivorship. To inform recommendations for fertility-related conversations in survivorship, this pilot study aimed to better understand background (e.g., age, diagnosis and treatment intensity) and psychosocial factors (i.e., perceived barriers and perceived susceptibility) associated with survivor interest in learning about fertility status. METHODS: Male survivors (N = 45) 15-25 years of age were recruited within 1-8 years of completing treatment. Survivors completed questionnaires based on the Health Belief Model (HBM) to assess perception of infertility risk and attitudes toward testing. RESULTS: Most survivors (n = 31; 69%) reported they were informed of their risk for infertility by a healthcare provider before treatment, but only 31% (n = 14) of the sample banked sperm. Nearly two-thirds of survivors (n = 29; 64%) were interested in learning more about their fertility post-treatment. This interest was significantly correlated with greater perceived susceptibility to infertility by survivors, but it was not associated with other psychosocial or background factors. CONCLUSION: Informing survivors of their personal infertility risk may increase interest in pursuing testing. Offering opportunities for fertility testing and family planning alternatives may mitigate potential psychological distress and unplanned pregnancy. While additional research is needed, future survivorship guidelines should encourage regular communication about fertility status and offer fertility testing for male survivors.