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Patient Perspectives on Clinician Communication about Sex and Sexual Function in Young Men with Spina Bifida
James Rague, MD1, Josephine Hirsch, BA1, Theresa Meyer, RN, MS, CPN1, Courtney Streur, MD, MS2, Ilina Rosoklija, MPH1, Stephanie Kielb, MD3, Earl Cheng, MD1, Diana Bowen, MD1, Elizabeth Yerkes, MD1, David Chu, MD, MSCE1.
1Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA, 2C.S Mott Children's Hospital, University of Michigan, Ann Arbor, MI, USA, 3Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

Background: Despite a myriad of challenges relating to sexual health and function, young men with spina bifida (SB) have reported high rates of interest in sexual activity. Objective, disease- specific measures of sexual function to help guide patient-physician interactions are lacking. Patient experience discussing sexual health-related issues with their physician and the degree to which counseling needs are met is not known. This study aimed to assess the perspectives of young men with SB on: (1) Components of effective physician counseling on sexual health; and (2) Appropriateness of and gaps in the use of the International Index of Erectile Function (IIEF) questionnaire in young men with SB. Methods: Semi-structured qualitative interviews about sexual health discussions between patient and physician were conducted with men ≥18 years of age with a diagnosis of SB who are cared for in a multi-disciplinary spina bifida center. Demographic and clinical characteristics were obtained from a patient survey. Participants completed the IIEF questionnaire prior to the interview. Interviews focused on: 1) Patient experience in talking to their physician about sex; 2) Suggestions for improving patient-clinician interactions; 3) Attitudes toward the IIEF; and 4) Suggestions for improvement. Iterative analysis of transcripts was performed by three coders. Thematic analysis was performed to derive themes from the series of codes that were inductively identified. Results: Of 30 eligible patients approached, 20 agreed to participate in semi-structured interviews. Median participant age was 22.5 years (range 18-29), and 80% had a diagnosis of myelomeningocele. Most reported not being in a relationship (14/20, 70%), being romantically interested in women (17/20, 85%), and not being currently sexually active (13/20, 65%). Eleven individuals (55%) reported prior sexual activity. Multiple important themes emerged and were categorized as barriers and facilitators of successful interactions (Table 1). Participants provided suggestions for improving discussions with providers about sex and sexual function including: 1) Notifying patients that discussion about sex will occur prior to clinic visits; 2) Creating space for discussions; 3) Respecting patient readiness to discuss; and 4) Making discussions disability specific (Table 2). Overall, patients felt that the IIEF questionnaire was applicable to them yet limited for those who did not define themselves as sexually active. Suggestions for improving the IIEF included: 1) Expanding the timeframe of sexual activity assessed; 2) Including questions about individual, non-partnered experiences; and 3) Including items specific to the way SB impacts sexual function (Table 2).
Conclusions: Young men with SB are interested in discussing sexual health with their physicians. Multiple patient and provider level barriers to effective conversations exist, though physician level opportunities for improvement were suggested. While the IIEF was well received, there is significant room for improvement to better capture the sexual experience of young men with SB.


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