Assessing sexual function in neurorehabilitation: insights and challenges from a spinal cord injury cohort

Although sexual dysfunction after spinal cord injury (SCI) is common and impacts quality of life, healthcare professionals may avoid this topic due to discomfort and knowledge gaps. Missing sexual health data can bias research findings, yet this issue remains largely unexplored in the context of SCI.

To describe missing sexual function data compared to other clinical domains and evaluate the association between changes in data collection procedures and missing data in females and males during post-acute specialized SCI rehabilitation.

Data from the population-based, multi-center Swiss Spinal Cord Injury (SwiSCI) Inception Cohort study were utilized in cross-sectional analyses to evaluate missed and incomplete assessments across multiple areas of functioning during SCI rehabilitation. Logistic regression analyses were used to compare missing data across clinical assessments and to evaluate the associations between sexual function data collection and demographic characteristics, SCI characteristics, rehabilitation center, and time period.

Missing data in the data sets from the International Spinal Cord Society (ISCoS) for female sexual and reproductive function, male sexual function, lower urinary tract (LUT), bowel, skin, and pulmonary function.

In data sets from 1126 individuals (29% female), ISCoS sexual function data sets had the highest rates of missed assessments compared to LUT, bowel, skin, and pulmonary function (46% vs 2%, 4%, 2%, 2%; P < .0001). Rates of incomplete assessments also varied across data sets (sexual function vs LUT, bowel, skin, and pulmonary: 4% vs 50%, 45%, 1%, 1%; P < .0001). Females had a lower percentage of completed sexual function assessments than males (43% vs 58%, P < .0001). From 2013-2016, data collection was <26% from the participants at 3 centers, but 67% at a center that routinely included a sexual function consultation with a physician (P < .001). Following an awareness initiative, the data collection rate improved to ≥61% at all centers.

Findings highlight that compared to other domains, sexual function data collection requires additional consideration, for example, training of healthcare providers.

This is the first study aimed at describing missing sexual function data and identifying potential strategies for improving sexual function data collection during post-acute SCI rehabilitation; however, some barriers to addressing sexual function remain unexamined.

This study highlights significant disparities in sexual function data collection relative to other clinical domains during SCI rehabilitation, especially among females. Further research, incorporating both patient and provider perspectives, is needed to explore why sexual function assessments are overlooked.