JU INSIGHT Applicability of the International Index of Erectile Function in Young Men With Spina Bifida
By: James T. Rague, MD, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois; Josephine Hirsch, BA, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois; Theresa Meyer, MS, RN, CPN, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois; Courtney Streur, MD, MS, CS Mott Children’s Hospital, University of Michigan, Ann Arbor; Ilina Rosoklija, MPH, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois; Stephanie Kielb, MD, Northwestern University Feinberg School of Medicine, Chicago, Illinois; Earl Y. Cheng, MD, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois; Diana K. Bowen, MD, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois; Elizabeth B. Yerkes, MD, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois; David I. Chu, MD, MSCE, Ann & Robert H. Lurie Children’s Hospital of Chicago, Illinois | Posted on: 19 Sep 2023
Rague JT, Hirsch J, Meyer T, et al. “I just haven’t done any of that”: applicability of the international index of erectile function in young men with spina bifida. J Urol. 2023;210(3):538-547.
Study Need and Importance
Young adults with spina bifida (SB) face sexual health challenges related to their underlying neurological condition. Current understanding of how SB alters male sexual health is limited by small studies with heterogeneous populations and poor objective assessments of sexual health. Often, non-SB-specific sexual health measures are used, such as the International Index of Erectile Function (IIEF), which is designed for able-bodied males. For men with SB, the IIEF appears to be limited in applicability, developmental appropriateness, and domain coverage to capture SB-specific sexual health experiences. However, the perceived applicability of the IIEF among men with SB is unknown. To improve clinical assessment and guide future disease-specific measure development, understanding the perspectives and sexual experiences of men with SB is imperative.
What We Found
Qualitative interviews with young men with SB elicited participant perspectives on the applicability of the IIEF. While several participants perceived the IIEF to be applicable, others reported it was not based on their self-definition of “sexually active.” Several aspects of the sexual health experience not well captured by the IIEF were identified (see Figure). Discordance was seen between IIEF responses and discussions with individual participants regarding their sexual experiences, suggesting poor understanding of the IIEF. Participants provided suggestions for how a measure could be improved and made more applicable for men with SB (see Figure).
Our findings may not be transferable to the broader population of individuals with SB outside of our study population.
Interpretation for Patient Care
The IIEF is inadequate to capture the sexual health experiences of men with SB. Thus, clinical assessment of sexual health relies predominantly on clinical communication. A disease-specific measure that better captures patient experience would be helpful to enhance communication and the objective assessment of sexual health in men with SB.