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Sexuality and intimacy in ALS: systematic literature review and future perspectives
  1. Barbara Poletti1,
  2. Laura Carelli1,
  3. Federica Solca2,
  4. Rita Pezzati3,4,
  5. Andrea Faini5,
  6. Nicola Ticozzi1,2,
  7. Hiroshi Mitsumoto6,
  8. Vincenzo Silani1,2
  1. 1 Department of Neurology and Laboratory of Neuroscience, Istituto Auxologico Italiano, IRCCS, Milan, Italy
  2. 2 Department of Pathophysiology and Transplantation, 'Dino Ferrari' Center, Università degli Studi di Milano, Milan, Italy
  3. 3 University of Applied Sciences and Arts of Southern Switzerland, Manno, Switzerland
  4. 4 Centro Terapia Cognitiva, Como, Italy
  5. 5 Department of Cardiovascular, Neural and Metabolic Sciences, Istituto Auxologico Italiano, IRCCS, Milan, Italy
  6. 6 Eleanor and Lou Gehrig ALS Center, Department of Neurology, Columbia University Medical Center, New York City, New York, USA
  1. Correspondence to Dr Vincenzo Silani, Department of Neurology and Laboratory of Neuroscience, Istituto Auxologico Italiano, IRCCS, Milan 20149, Italy; vincenzo.silani{at}unimi.it

Abstract

Several features of amyotrophic lateral sclerosis (ALS) impact on sexuality and intimate relationship; however, the issue has received poor attention so far. We performed a systematic literature review in order to provide an up-to-date account of sexuality in ALS. References were identified by searches of PubMed, Web of Science, Scopus and PsycINFO (1970–2017, English literature). The following were the key terms: ‘sexual’ OR ‘sexuality’ OR ‘intimacy’ OR ‘marital’ AND ‘ALS’ OR ‘Amyotrophic Lateral Sclerosis’ OR ‘Motor Neuron Disease’ OR ‘MND’. Titles and abstracts were screened for relevance and a full-text analysis was performed on the selected articles. Studies were included if they referred to sexual well-being/activities/functions or intimate relationship between patients and their partners and management of such topic by clinicians. Eligibility assessment was performed independently by two reviewers. A thematic and level of evidence classification of studies was performed. Studies’ design, objectives, measurements and outcomes were summarised. Thirty articles were included and four topics were identified: intimacy in the dyads; sexual activities in patients and with their partners; sexual function disturbances; and sexuality and cognitive-behavioural alterations. The quality of the studies varies, with globally poor level of evidence. Some sexuality issues have been only sparsely addressed, such as gender-related differences, same-sex relationships and sexual activities other than intercourse. Sexuality in ALS is still not adequately considered by clinicians and researchers. We present preliminary recommendations for improving sexuality and intimacy at any ALS multidisciplinary clinics.

  • ALS
  • movement disorders
  • psychology
  • rehabilitation
  • clinical neurology

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Footnotes

  • BP and LC contributed equally.

  • HM and VS contributed equally.

  • Contributors BP and LC conceived the study and wrote the manuscript. FS and RP performed the literature search and selected the relevant studies. AF and NT provided methodological support in the study design and classified retrieved articles according to level of evidence. HM and VS critically revised the manuscript and provided the final approval, thanks to their clinical experience with patients with ALS.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Disclaimer All authors had full access to all data in the study and were responsible for writing the manuscript. The corresponding author had the final responsibility for content and the decision to submit for publication.

  • Competing interests VS received grants from Cytokinetics. HM received grants from CDC, MDA Wings Over Wall Street, Spastic Paraplegia Foundation (SPF), Tsumura, ALS Association, MNDA, Adams Foundation and Japanese ALS Association; grants and personal fees from Cytokinetics, Mitsubishi-Tanabe and Biogen; and personal and fees from Biohaven and Sunovion. All these grants were outside the submitted work.

  • Patient consent Not required.

  • Ethics approval Ethics committee authorisation was not required as this study reviewed previously published data.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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