International spinal cord injury male sexual function and female sexual and reproductive function basic data sets-version 2.0

Marcalee S Alexander; Peter W New; Fin Biering-Sørensen; Frederique Courtois; Giulio Del Popolo; Stacy Elliott; Carlotte Kiekens; Lawrence Vogel; Jean G Previnaire

doi:10.1038/scsandc.2017.50

International spinal cord injury male sexual function and female sexual and reproductive function basic data sets-version 2.0

Spinal Cord Ser Cases. 2017 Aug 10:3:17050. doi: 10.1038/scsandc.2017.50. eCollection 2017.

Authors

Marcalee S Alexander^{1

2

3}, Peter W New^{4

5

6}, Fin Biering-Sørensen⁷, Frederique Courtois⁸, Giulio Del Popolo⁹, Stacy Elliott¹⁰, Carlotte Kiekens¹¹, Lawrence Vogel^{12

13}, Jean G Previnaire¹⁴

Affiliations

¹ Birmingham VA Medical Center, Birmingham, AL, USA.
² Department of Physical Medicine and Rehabilitation, University of Alabama at Birmingham School of Medicine, Birmingham, AL, USA.
³ Department of Physical Medicine and Rehabilitation Harvard School of Medicine, Boston, MA, USA.
⁴ Spinal Rehabilitation Service, Caulfield Hospital, Alfred Health, VIC, Australia.
⁵ Epworth-Monash Rehabilitation Medicine Unit, Southern Medical School, Monash University, Melbourne, VIC, Australia.
⁶ Department of Epidemiology and Preventive Medicine, School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia.
⁷ Clinic of Spinal Cord Injuries, Neuroscience Centre, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark.
⁸ Department of Sexology, Université du Québec à Montréal, Montréal, Canada.
⁹ Spinal Unit and Neuro-Urology, Careggi University Hospital, Florence, Italy.
¹⁰ Department of Psychiatry and Urologic Sciences and ICORD, University of British Columbia, Vancouver, BC, Canada.
¹¹ Department of Physical and Rehabilitation Medicine, University Hospitals Leuven, Leuven, Belgium.
¹² Department of Pediatrics, Rush University Chicago, Chicago, IL, USA.
¹³ Shriners Hospital for Children, Chicago, IL, USA.
¹⁴ Spinal Unit, Centre Calve, Fondation Hopale, Berck-sur-Mer, France.

Abstract

Study design: Data set review and modification.

Objective: To describe modifications in the International Spinal Cord Injury (SCI) Male Sexual Function Basic Data Set Version 2.0 and the International SCI Female Sexual and Reproductive Function Basic Data Set Version 2.0.

Setting: International expert work group using on line communication.

Methods: An international team of experts was compiled to review and revise the International SCI Male Sexual Function and Female Sexual and Reproductive Function Basic Data Sets Version 1.0. The group adapted Version 1.0 based upon review of published research, suggestions from concerned individuals and on line work group consensus. The revised data sets were then posted on the International Spinal Cord Society (ISCoS) and American Spinal Injury Association (ASIA) websites for 2 months for review. Subsequently, the data sets were approved by the ISCoS Scientific and Executive Committees and ASIA board of directors.

Results: The data sets were modified to a self-report format. They were reviewed for appropriateness for the pediatric age group and adapted to include a new variable to address the issue of sexual orientation. A clarification of the difference between the data sets and the autonomic standards was also developed.

Conclusion: Sexuality is a continuously evolving topic. Modifications were needed to address this topic in a comprehensive fashion. It is recommended that Version 2.0 of these data sets are used for ongoing documentation of sexual status in the medical record and for documentation of sexual concerns during on-going research.

Keywords: Medical research; Physiology.