To evaluate the applicability of the International Index of Erectile Function (IIEF) in young men with spina bifida and identify spina-bifida-specific sexual experiences not captured by this measure.
Semi-structured interviews were conducted between February 2021-May 2021 with men ≥18 years of age with spina bifida. The IIEF was completed by participants and perspectives on its applicability were discussed. Participant experiences and perspectives around sexual health were discussed to identify aspects of the sexual experience not well captured by the IIEF. Demographic and clinical characteristics were obtained from a patient survey and chart review. Conventional content analysis framework was used for transcript coding.
Of 30 eligible patients approached, 20 participated. Median age was 22.5 years (range 18-29), and 80% had myelomeningocele. Most identified as heterosexual (17/20, 85%), were not in a relationship (14/20, 70%), and were not currently sexually active (13/20, 65%). Some perceived the IIEF as applicable, while others reported it was not as they do not define themselves as sexually active. Aspects of the sexual experience not captured by the IIEF included: 1) lack of control over sexual function; 2) poor lower body sensation; 3) urinary incontinence; 4) spina-bifida-specific physical limitations; and 5) psychosocial barriers. Participant suggestions for improving the IIEF to increase its applicability were identified.
While many perceived the IIEF as applicable, the measure inadequately captures the diverse sexual experiences of young men with spina bifida. Disease-specific instruments to evaluate sexual health are needed in this population.
The Journal of urology. 2023 May 25 [Epub ahead of print]
James T Rague, Josephine Hirsch, Theresa Meyer, Courtney Streur, Ilina Rosoklija, Stephanie Kielb, Earl Y Cheng, Diana K Bowen, Elizabeth B Yerkes, David I Chu
Division of Urology, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, Illinois., Division of Urology, C.S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan., Department of Urology, Northwestern University Feinberg School of Medicine, Chicago, Illinois.