Identifying genome-by-childhood trauma interactions for depression using a forest-based approach in the UK Biobank and Adolescent Brain Cognitive Development Study.

Although sexual health is widely recognized as integral to overall well-being, it continues to be under-addressed in individuals with disabilities. The World Health Organization defines sexual health as “a state of physical, emotional, mental and social well-being in relation to sexuality.” Despite this broader framework, sexual health discussions in disability care remain limited due to a variety of factors, including provider discomfort, lack of disability-specific training, and societal presuppositions. These challenges are magnified in Duchenne muscular dystrophy (DMD), an X-linked recessive condition caused by mutations in the DMD gene, leading to loss of dystrophin protein and progressive muscle degeneration. Weakness begins in early childhood and continues to progress, typically resulting in the loss of ambulation before puberty, and ultimately progressing to respiratory and cardiac compromise in early adulthood. Sexual health in DMD is uniquely shaped by the effects of long-term corticosteroid therapy, which, while critical for slowing disease progression, often suppresses puberty and necessitates pubertal induction with hormone replacement therapy. As life expectancy for individuals with DMD continues to increase, through multidisciplinary management and emerging gene-targeted therapies, sexual and reproductive healthcare has become an essential component of comprehensive management in DMD. Recent studies have begun to investigate sexual health experiences in neuromuscular conditions. In qualitative interviews with adults living with a range of neuromuscular diseases, Møller and colleagues found that participants frequently encountered societal assumptions of asexuality, limited representation of disability in sexual discourse, and reluctance among healthcare professionals to address sexuality in clinical encounters. In the UK, semi-structured interviews with 20 individuals with DMD revealed aspirations comparable to those of nondisabled peers, such as marriage and family life, but also significant barriers to pursuing sexual and romantic relationships, including physical limitations, fewer opportunities for partnerships, and pervasive societal prejudices. A more recent UK focus group study (n = 6) further explored men's perspectives on sexual health, testosterone treatment, and fertility, underscoring unmet needs for information, support, and individualized care. Building on this work, Powell and Carlton developed a qualitative framework of health-related quality of life in DMD that emphasized autonomy, identity, and, in particular, social relationships, showing that sexual and reproductive health is inseparable from the broader lived experience. Yet perspectives of adults with MD in the United States remain underexplored, despite potentially distinct barriers shaped by healthcare systems and social attitudes. In the U.S., the American Academy of Pediatrics has noted that youth with disabilities routinely receive substandard sexual and reproductive health education. Our prior work showed that adolescents with DMD often miss critical opportunities for inclusive, disability-informed learning in both school and home settings. Best practice calls for early, open, and ongoing communication about sexual health, tailored to developmental stage and medical needs within a multidisciplinary care framework, yet little is known about how these principles align with the lived experiences of adults with MD in the United States. To address this gap, the present study extends our prior work by focusing specifically on sexual and reproductive healthcare and the relationship between patients and their medical teams. We conducted semi-structured interviews with 30 adults across the United States to explore lived experiences of sexual and reproductive healthcare and identify priorities for patient-centered, multidisciplinary care. Guided by an interpretivist approach that recognizes knowledge as socially constructed and grounded in lived experience, this study sought to answer the following questions: (1) How do adults with muscular dystrophies describe their experiences with sexual and reproductive healthcare? (2) What barriers do they identify in accessing comprehensive sexual and reproductive healthcare? and (3) How do they envision sexual and reproductive healthcare being delivered differently to better meet their needs? We conducted a mixed-methods study with a qualitative emphasis to examine experiences of sexual and reproductive healthcare among adults with muscular dystrophies (MD). Participants contributed narrative data through either synchronous semi-structured interviews or written open-ended responses, with descriptive quantitative data collected to contextualize participant characteristics and care experiences. We recruited 30 adults (≥18 years) from clinical and community settings across the United States using purposive sampling through neuromuscular clinics and MD-focused community organizations, sup