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Transgender/non-binary (TNB) adolescents are at increased risk for mental health concerns, and caregiver awareness is important to facilitate access to care. Yet, limited research has examined caregiver awareness of TNB mental health. Thus, we examined (1) the prevalence of internalizing symptoms (depression, generalized anxiety, separation anxiety, social anxiety) among TNB adolescents and (2) associations between adolescent and caregiver reports of adolescent mental health symptoms. TNB adolescents (N = 75) aged 12-18 and a caregiver were recruited from a multidisciplinary gender clinic in Ohio. Adolescents self-reported their mental health symptoms via the CDI and SCARED. Caregivers reported their perceptions of the adolescent's mental health symptoms via the CASI-5. Descriptive statistics assessed participant characteristics, adolescent self-reported mental health symptoms, and caregiver proxy reports of adolescent mental health symptoms. Pearson's correlations and scatterplots were used to compare adolescent and caregiver reports and McNemar tests assessed if the differences were statistically significant. Most TNB adolescents reported elevated symptoms of depression (59%), generalized anxiety (75%), separation anxiety (52%), and social anxiety (78%). Caregiver and adolescent reports were significantly correlated for depression (r = .36, p = .002), separation anxiety (r = .39, p < .001), and social anxiety (r = .47, p < .001). Caregiver and adolescent reports of generalized anxiety were not significantly correlated (r = .21, p = .08). McNemar tests were significant (all p < .001), such that adolescents' reports met clinical cutoffs far more than their caregivers' reports. CONCLUSIONS: Though adolescent and caregiver reports were low to moderately correlated, youth reports were consistently higher, suggesting the importance of interventions to increase caregiver understanding of TNB adolescent mental health. WHAT IS KNOWN: • Transgender/non-binary adolescents are at high risk for mental health concerns and caregivers are essential to coordinate care. WHAT IS NEW: • This study expands the diagnostic mental health sub-categories examined in transgender/non-binary adolescents, noting elevated symptoms of separation and social anxiety. • Transgender/non-binary adolescents reported more symptoms of depression, generalized anxiety, separation anxiety, and social anxiety than caregivers.

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BACKGROUND: As survival rates for individuals with sickle cell disease (SCD) increase, calls have been made to improve their reproductive healthcare and outcomes. The research team created a web-based program entitled Fertility edUcaTion to Understand ReproductivE health in Sickle cell disease (FUTURES). The study aim was to use the Consolidated Framework for Implementation Research (CFIR) during pre-implementation to identify challenges and opportunities from the individual to systems level of implementation to ultimately optimize the integration of FUTURES into clinical practice. METHODS: Semi-structured interviews were conducted with clinicians, research team members, and adolescent and young adult (AYA) males with SCD and their caregivers who participated in pilot testing. Interviews (N = 31) were coded inductively and then mapped onto CFIR domains (i.e., outer setting, inner setting, characteristics of individuals, and intervention characteristics). RESULTS: Research team interviews indicated the lack of universal guidelines for reproductive care in this population and gaps in reproductive health knowledge as key reasons for developing FUTURES, also highlighting the importance of collaboration with community members during development. Clinicians reported intraorganizational communication as essential to implementing FUTURES and discussed challenges in addressing reproductive health due to competing priorities. Clinicians, AYAs, and caregivers reported positive views of FUTURES regarding length, engagement, accessibility, and content. Suggestions for the best setting and timing for implementation varied. CONCLUSIONS: Using CFIR during the pre-implementation phase highlighted challenges and opportunities regarding integrating this program into SCD care. These findings will inform adaptation and further testing of FUTURES to ensure effective implementation of this novel education program.

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Adult males with sickle cell disease (SCD) may have abnormal semen parameters, raising the concern that SCD and/or treatments may impact fertility. Yet, studies that include adolescents are lacking. To determine if fertility testing is feasible in male adolescents with SCD, and to explore their experiences and outcomes of fertility testing, 33 adolescents who completed a web-based SCD reproductive health education program were offered a free semen analysis. Five (15%) obtained testing and each had abnormalities. Barriers to testing included lack of time and transportation and discomfort. Findings highlight the need for larger, longitudinal studies using innovative testing approaches.

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OBJECTIVES: The COVID-19 pandemic posed new challenges to physical and psychological well-being. Families with pediatric cancer patients were particularly vulnerable due to changes like children staying at home, hospital policy shifts, and caring for an immunocompromised child. Limited research exists on COVID-19's effects on these families. This study aimed to assess the pandemic's impact and identify psychosocial support gaps. METHODS: Participants (N = 256) were parents of children with cancer recruited via Facebook in partnership with Momcology®, a community-based organization for pediatric cancer, between February and May 2021. Qualitative analyses used open-ended responses about the pandemic's impact on the family. RESULTS: Analysis revealed 6 themes, with positive and negative sentiments: family changes (n = 169; 61% negative), social isolation (n = 154; 100% negative), emotional impact (n = 143; 89% negative), school changes (n = 126; 80% negative), health-care changes (n = 111; 96% negative), and physical health (n = 49; 73% negative). Family changes overarched all themes and included financial strains, at-home schooling, and family bonding. Parents highlighted social isolation and the emotional impact of pandemic-related changes. School changes forced parents to balance remote-work and childcare. Health-care changes limited resources and visitation. Parents reported their children were less active and slept less but had fewer illnesses. SIGNIFICANCE OF RESULTS: Many common pandemic challenges were exacerbated by the stress of caring for a child with cancer. Parents struggled most with loss of social support and feelings of isolation. Careful consideration should be given to providing resources for parents of children with cancer and their families.

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Medication non-adherence rates in children range between 50% and 80% in the United States. Due to multifaceted outpatient routines, children receiving hematopoietic stem cell transplant (HCT) are at especially high risk of non-adherence, which can be life-threatening. Although digital health interventions have been effective in improving non-adherence in many pediatric conditions, limited research has examined their benefits among families of children receiving HCT. To address this gap, we created the BMT4me© mobile health app, an innovative intervention serving as a "virtual assistant" to send medication-taking reminders for caregivers and to track, in real-time, the child's medication taking, barriers to missed doses, symptoms or side effects, and other notes regarding their child's treatment. In this randomized controlled trial, caregivers will be randomized to either the control (standard of care) group or the intervention (BMT4me© app) group at initial discharge post-HCT. Both groups will receive an electronic adherence monitoring device (i.e., medication event monitoring system "MEMS" cap, Medy Remote Patient Management "MedyRPM" medication adherence box) to store their child's immunosuppressant medication. Caregivers who agree to participate will be asked to complete enrollment, weekly, and monthly parent-proxy measures of their child's medication adherence until the child reaches Day 100 or complete taper from immunosuppression. Caregivers will also participate in a 15 to 30-minute exit interview at the conclusion of the study. Descriptive statistics and correlations will be used to assess phone activity and use behavior over time. Independent samples t-tests will examine the efficacy of the intervention to improve adherence monitoring and reduce readmission rates. The primary expected outcome of this study is that the BMT4me© app will improve the real-time monitoring and medication adherence in children receiving hematopoietic stem cell transplant following discharge, thus improving clinical outcomes.

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Individuals with sickle cell disease are increasingly surviving into adulthood, many of whom have interest in future biological parenthood. Reproductive health knowledge is low among adolescent and young adult males and their caregivers. Their understanding of these topics is needed to optimize their reproductive health outcomes. As such, through collaboration with a community advisory board (adolescents and young adults with sickle cell disease and mothers of adolescent and young adult males with sickle cell disease) and digital design team, we developed a web-based sickle cell disease-focused reproductive health program entitled FUTURES to address these knowledge gaps. For phase I of this two phase feasibility and acceptability study, adolescent and young adult males and their caregivers will complete a pre- and post-program reproductive health knowledge and attitudes questionnaire to assess change in knowledge. In phase II, after learning about fertility testing as part of the FUTURES curriculum, adolescent and young adult male participants are given the option to pursue testing. The two-phase study aims to: 1) develop and test the feasibility, acceptability, and efficacy of a reproductive health web-based educational program at increasing reproductive health knowledge in male adolescent and young adult males with sickle cell disease and their caregivers, and 2) assess feasibility of fertility testing. The long-term goal is to improve reproductive and psychosocial outcomes among adolescent and young adult males with sickle cell disease.

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PURPOSE: We aimed to examine the concurrent associations of gender-affirming hormonal interventions (i.e., puberty blockers, testosterone, estrogen), as well as family and friend social support, on transgender and nonbinary (TNB) adolescents' reports of anxiety symptoms, depressive symptoms, nonsuicidal self-injury (NSSI), and suicidality. We hypothesized that gender-affirming hormonal interventions and greater social support would be associated with lower levels of mental health concerns. METHODS: Participants (n = 75; aged 11-18; Mage = 16.39 years) were recruited for this cross-sectional study from a gender-affirming multidisciplinary clinic. Fifty-two percent were receiving gender-affirming hormonal interventions. Surveys assessed anxiety and depressive symptoms, NSSI and suicidality in the past year, and social support from family, friends, and significant others. Hierarchical linear regression models examined associations between gender-affirming hormonal interventions and social support (i.e., family, friend) with mental health while accounting for nonbinary gender identity. RESULTS: Regression models explained 15%-23% of variance in TNB adolescents' mental health outcomes. Gender-affirming hormonal interventions were associated with fewer anxiety symptoms (ß = -0.23; p < .05). Family support was associated with fewer depressive symptoms (ß = -0.33; p = .003) and less NSSI (ß = -0.27; p = .02). Friend support was associated with fewer anxiety symptoms (ß = -0.32; p = .007) and less suicidality (ß = -0.25; p = .03). DISCUSSION: TNB adolescents had better mental health outcomes in the context of receiving gender-affirming hormonal interventions and having greater support from family and friends. Findings highlight the important role of quality family and friend support for TNB mental health. Providers should aim to address both medical and social factors to optimize TNB mental health outcomes.

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STUDY OBJECTIVE: Reproductive health counseling is important for youth with sickle cell disease (SCD) given that they experience potential infertility risks from SCD and its treatments and high rates of unplanned pregnancies. Thus, the objective of this study was to describe documented occurrences of reproductive health counseling among youth with SCD and examine differences in counseling by sociodemographic and treatment characteristics. METHODS: Data were abstracted from 167 electronic medical records of patients (age = 14-21, 54% female) with SCD (1/01/2015-12/31/19) at 2 sites (Nationwide Children's Hospital and Hassenfeld Children's Hospital at NYU Langone). Descriptive statistics, point-biserial correlations, and χ2 tests were used to examine sample characteristics and relationships between sociodemographic factors, clinical characteristics, site, and reproductive health counseling (fertility, contraception, and genetic counseling). RESULTS: Seven of 167 (4%) youth had documented discussions about the potential impacts of SCD on fertility. Fertility counseling was also low among those who received a bone marrow transplant or hydroxyurea (n = 1/2, 50%; and n = 1/104, 1%, respectively). Only 57% of youth received contraception counseling, and only 55% of sexually active youth used birth control; birth control use was associated with older age (P = .028), severe clinical disease (P = .003), and documentation of contraception counseling (P = .047). Most youth received genetic counseling (80%), although more genetic counseling occurred at Nationwide Children's Hospital (P < .001). There was no association between gender and any type of counseling. CONCLUSION: Findings suggest reproductive health counseling gaps in this population, with important implications for future infertility distress and unplanned pregnancies. Future research should examine barriers to counseling, explore fertility impacts of SCD and treatments, and inform evidence-based guidelines for reproductive health care in SCD.

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