Journal of neuromuscular diseases · 2026
Sexual health in neuromuscular diseases: Neglected challenges revealed by a scoping review.
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El Kaïm Audrey, Banos Marjorie, Decostre Valérie, Birnbaum Simone, Hogrel Jean-Yves, Gargiulo Marcela
Аннотация
BACKGROUND: Neuromuscular diseases (NMDs) are heterogeneous disorders causing progressive motor decline, multisystem complications, and reduced quality of life. Sexual health, a key component of well-being, remains largely overlooked. This scoping review mapped and synthesized evidence on sexual dysfunction (SD) in adults with NMDs, focusing on prevalence, underlying mechanisms, and research gaps.
METHODS: A systematic search of PubMed, Cochrane Library, and Google Scholar (February-March 2025) identified studies reporting original data on SD in adults with genetically or clinically confirmed NMDs. Citation tracking complemented the search. Data were narratively synthesized following PRISMA-ScR guidelines.
RESULTS: Twenty-seven studies (1983-2024) including 2428 individuals met the inclusion criteria. Most were cross-sectional and questionnaire-based studies. SD was frequent but heterogeneous across conditions. In myotonic dystrophy, erectile dysfunction often related to hypogonadism; in Charcot-Marie-Tooth disease, higher disease severity correlated with altered desire and satisfaction in women; amyloid neuropathies showed autonomic-related erectile and ejaculatory dysfunction in men and multidimensional impairment in women; inflammatory myopathies revealed high SD prevalence in both sexes; amyotrophic lateral sclerosis involved intimacy loss mainly due to disability and psychosocial distress, despite preserved interest; myasthenia gravis displayed SD mainly associated with mental health conditions, X-linked spinal muscular atrophy showed predominantly endocrine-related SD.
CONCLUSION: SD is common, multifactorial, and under-recognized in adults with NMDs. The available evidence remains limited by non-inclusive approaches to sexual orientation and intimacy, scarce physiological assessments, and substantial gaps regarding female sexual health, longitudinal data. Integrating sexual health assessment into routine care for people with NMDs should be prioritized.
METHODS: A systematic search of PubMed, Cochrane Library, and Google Scholar (February-March 2025) identified studies reporting original data on SD in adults with genetically or clinically confirmed NMDs. Citation tracking complemented the search. Data were narratively synthesized following PRISMA-ScR guidelines.
RESULTS: Twenty-seven studies (1983-2024) including 2428 individuals met the inclusion criteria. Most were cross-sectional and questionnaire-based studies. SD was frequent but heterogeneous across conditions. In myotonic dystrophy, erectile dysfunction often related to hypogonadism; in Charcot-Marie-Tooth disease, higher disease severity correlated with altered desire and satisfaction in women; amyloid neuropathies showed autonomic-related erectile and ejaculatory dysfunction in men and multidimensional impairment in women; inflammatory myopathies revealed high SD prevalence in both sexes; amyotrophic lateral sclerosis involved intimacy loss mainly due to disability and psychosocial distress, despite preserved interest; myasthenia gravis displayed SD mainly associated with mental health conditions, X-linked spinal muscular atrophy showed predominantly endocrine-related SD.
CONCLUSION: SD is common, multifactorial, and under-recognized in adults with NMDs. The available evidence remains limited by non-inclusive approaches to sexual orientation and intimacy, scarce physiological assessments, and substantial gaps regarding female sexual health, longitudinal data. Integrating sexual health assessment into routine care for people with NMDs should be prioritized.