Perceptions of sexuality in individuals with Amyotrophic Lateral Sclerosis (ALS) and their treating clinicians.

INTRODUCTION: Amyotrophic Lateral Sclerosis (ALS) may not affect an individual's sexual function directly, but it can indirectly impact their sexual activity. Sexual partners often become caregivers, diminishing sexuality within a relationship. This can result in decline of quality of life.

OBJECTIVE: The study aimed to explore the perspectives of individuals with ALS and their treating clinicians regarding the importance of sexuality in rehabilitation within a multidisciplinary ALS center. We hypothesize that individuals with ALS will express the need for sexuality-related discussions as a therapy.

METHOD: Electronic 11-item questionnaires were anonymously completed by individuals with ALS (n = 21) and ALS healthcare professionals (n = 81) between August 2014 to June 2016. Descriptive statistics were performed in STATA 14.

RESULTS: Majority (90%, n = 92) of respondents stated that ALS impacts the sexuality of an individual with ALS, and agreed that sexuality-related discussion is needed as a complementary therapy. Over 75% of clinicians reported they were not familiar with any strategies or interventions to help the patients.

CONCLUSION: ALS indirectly affects sexuality, thus confirming the need for promoting awareness regarding sexuality-related topics among individuals with ALS and healthcare professionals. ALS multidisciplinary clinics need to improve their delivery of care to address sexual rehabilitation as a complementary therapy.