Objective: Past research suggests that certain sociodemographic factors may put youth with spina bifida (SB) at risk for poor outcomes. The aims of this study were to examine (a) associations between ten sociodemographic factors and health-related, neuropsychological, and psychosocial functioning among youth with SB,(b) cumulative sociodemographic risk as a predictor of youth outcomes as moderated by age, and (c) SB-related family stress as a mediator of longitudinal associations between cumulative sociodemographic risk and youth outcomes. Method: Participants were youth with SB (N = 140 at Time 1; M_age at Time 1 = 11.43, 53.6% female) recruited as part of a larger, longitudinal study. The study included questionnaire (parent-, teacher-, and youth-report), neuropsychological testing, and medical chart data across three time points, spaced 2 years apart. Results: A subset of the sociodemographic factors and their cumulative risk were associated with study outcomes. Specifically, youth characterized by sociodemographic risk had greater pain and lower academic achievement, but also fewer urinary tract infections and fewer attention and executive function problems. Age did not moderate the association between cumulative risk and outcomes. Cumulative risk predicted lower SB-related family stress, which, in turn, predicted several outcomes. Conclusions: Examining a range of sociodemographic factors is warranted. Sociodemographic risk is linked to poorer outcomes for some risk indicators but similar or better outcomes for others. Results have implications for delivering evidence-based, diversity-sensitive clinical care to youth with SB. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Objective: Fertility-related health care and decision-making needs for youth with differences of sex development (DSD) are complex and vary by condition and the values and preferences of each individual and their partner and/or family. Discussing fertility implications can be a challenging aspect of clinician and family communication about a DSD diagnosis. This qualitative study assesses fertility-related communication experiences of adolescents and young adults (AYA) with DSD. Method: Participants included 97 AYA with DSD ages 12–26 years ( M = 18.5, SD = 3.9) who completed questionnaires on demographic and medical information and patient–clinician communication. A subsample of 33 AYA also completed semistructured interviews about experiences with fertility discussions. Results: Two major themes, each with subthemes, were identified: (1) understanding of fertility related to (1a) one’s own fertility status, (1b) reproductive and parenting options, and (1c) emotional reactions to one’s own fertility status and (2) conversations about fertility related to (2a) reflections on conversations, (2b) barriers, and (2c) advice. Conclusions: AYA perspectives in this study provide important information about how youth with DSD learn about their fertility status, the impact their fertility status has on them, and the fertility-related conversations they have with their providers and families. Specific recommendations for providers and parents or caregivers include the following: inform youth of their fertility status as early as possible; be direct but patient in delivering information; begin by giving basic information and provide more detail as the conversation unfolds; revisit the conversation over time to allow for further discussion or information-seeking; offer additional information or resources, including behavioral health resources. Implications for Impact Statement: Fertility-related health care needs for youth with differences of sex development (DSD) are complex and vary by condition and individual preferences. This qualitative study assesses fertility-related communication experiences of adolescents and young adults with DSD. Findings have important clinical implications for how health care providers and families can effectively communicate about fertility.

Background and Objective Among adolescents with type 1 diabetes, research has found that their perception of their diabetes management is an important predictor of actual diabetes management. There is a need for measures that assess adolescents’ perception of their ability to independently complete daily diabetes self-care tasks. The current study examined the psychometric properties of the Diabetes Skills Checklist Teen-Report (DSC-T) and DSC Parent of Teen-Report (DSC-PT), which assess perceived independence in diabetes self-care skills. Methods Data were from 1450 adolescents aged 12 to 18 years and their parents who participated in the Diabetes Camp Matters Study. Families completed the DSC as well as other questionnaires online assessing demographic and diabetes-related information, diabetes strengths, and diabetes-specific emotional distress. Results Exploratory factor analysis revealed a 14-item DSC-T and 12-item DSC-PT, both with excellent internal consistency and concurrent validity. Both the DSC-T and DSC-PT were found to be positively correlated with diabetes strengths and negatively correlated with HbA1c, and the DSC-PT was significantly correlated with parent-reported diabetes distress. Adolescents who used insulin pumps and continuous glucose monitoring reported higher perceived independence in diabetes self-care skills compared to adolescents who used insulin pens/syringes or a blood glucose meters. No differences were found based on demographic characteristics. Conclusions The DSC-T and DSC-PT have strong potential to be used during diabetes clinic visits to spark discussion regarding adolescents’ self-care, which would allow for a more successful transfer of diabetes care from parent to adolescent, and eventually, the transition from pediatric to adult healthcare.