Feasibility of precision functional mapping in youth multi-echo fMRI data.

Duchenne Muscular Dystrophy (DMD) is an X-linked neuromuscular disorder that leads to progressive muscle weakness. The majority of individuals with DMD treated with long-term glucocorticoids lose their ability to walk independently by the age of 15 years. With advances in medical care, the life expectancy of people with DMD has markedly increased in the last three decades. Psychosocial support is an integral part of multidisciplinary care for people with DMD, and there is a growing need for psychosocial support through their transition from adolescence to adulthood. Sexual health and fertility are crucial components of psychosocial well-being. However, individuals with DMD with physical limitations often face challenges related to relationships and sexual dysfunction, which can negatively affect their quality of life. While the current clinical guidelines recognize these challenges and advise healthcare providers to discuss these topics during appointments, there is limited data on the impact of DMD on sexuality and fertility, and more guidance is needed as to how and when these conversations should occur. This article aims to review the current standard of care for DMD based on the 2018 Care Considerations, provide a summary of available data on these topics, discuss the gap in care, and pose questions for further research. This review, in turn, will inform current and future practices for healthcare professionals caring for individuals with DMD. Due to the limited but evolving data on sexual health and fertility in individuals with DMD, we will include all types of published studies in this review. This encompasses observational studies, exploratory studies, case reports, surveys, and expert opinion pieces. Additionally, some information will be drawn from studies involving individuals with other disabilities or neuromuscular conditions. The sources of evidence will be clearly indicated throughout the review. The 2018 clinical care considerations for DMD acknowledge that sexuality and fertility are an essential part of psychosocial assessment for individuals with DMD. After assessing interest, knowledge, and readiness as developmentally and socially appropriate, healthcare providers are encouraged to facilitate discussions about sexuality and fertility because many individuals with DMD may find it challenging to discuss these topics with their caregivers. The suggested topics include social support, self-esteem, body image, guidance on the use of online social media and dating, gender identity and sexual orientation, relationships and reproduction, family planning, genetic counseling, prenatal genetic diagnosis, and physical safety related to acts of intimacy or self-pleasure. Patients should also be referred to specialized clinics or care teams, such as reproductive specialists, genetic counselors, and marriage and relationship counselors, with expertise in these areas for professional guidance and follow-up care. There are limited data available regarding the impact of DMD on sexual health and fertility. In general, people living with neuromuscular disorders have fewer opportunities for sexual expression than people without neuromuscular disorders, and the degree of physical impairment is inversely correlated with sexual satisfaction. Reduced mobility and motor strength and function can make it more challenging to engage in intimate or self-pleasure activities. At the same time, dependence on caregivers for basic daily activities can also limit opportunities for sexual expression. Furthermore, existing ableist assumptions in society can render the needs of people with disabilities unrecognized in planning and policy. The social isolation often accompanying limited mobility and lack of accessible community spaces can make it difficult for individuals with DMD to meet new people and establish relationships in the first place.