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

Issue title: Special Section: Neurosexuality: A Transdisciplinary Approach to Sexuality in Neurorehabilitation

Guest editors: Alexander Moreno, Caron Gan and Nathan D. Zasler

Article type: Research Article

Authors: Shahbazi, Mona^{a; *} | Holzberg, Shara^a | Thirunavukkarasu, Saeyoan^b | Ciani, Gioia^c

Affiliations: [a] Department of Neurology, Hospital for Special Surgery, New York, NY, USA | [b] Department of Neurology, Northwell Health, North Shore University Hospital, Manhasset, NY, USA | [c] Department of Health Professions, Hofstra University, Hempstead, NY, USA

Correspondence: [*] Address for correspondence: Mona Shahbazi, Department of Neurology, Hospital for Special Surgery, 530 East 70th Street, New York, NY 10021, USA. Tel.: +1 646 797 8917; Fax: +1 212 249 9185; E-mail: ShahbaziM@hss.edu.

Abstract: 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.

Keywords: ALS, sexual education, multidisciplinary care, neurosexuality, quality of life; sexuality

DOI: 10.3233/NRE-172204

Journal: NeuroRehabilitation, vol. 41, no. 2, pp. 331-342, 2017