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As our patients with spina bifida (SB) continue to live longer into adulthood we recognise that many of these men experience challenges with sexual health, related to their underlying neurological function. Few studies on male sexual health in this population have utilised objective, validated measures of sexual health. Rather, non-SB-specific sexual health measures are often used; one of these being the International Index of Erectile Function (IEEF). The IIEF was designed and validated in a population of able-bodied males with previously normal function, likely limiting its applicability and validity in men with SB. Rague et al. have studied 20 eligible patients (≥18 years of age) attending a large multidisciplinary SB centre (Chicago). Inclusion criteria included fluency in English and lack of cognitive impairment / developmental delay. Participants completed the IIEF and also had a semi-structured interview with a trained interviewer. Median participant age was 22.5 years (range 18-29) and most reported being heterosexual (85%), not being in a relationship (70%) and not being currently sexually active (65%). IIEF scores suggested severe erectile dysfunction, low orgasmic function and intercourse satisfaction, but high sexual desire. Specific terms within the IIEF were confusing to some – ‘erection’, ‘orgasm’ and ‘penetration’. Several participants reported that the IIEF was not applicable as they had never been sexually active. The IIEF was unable to capture certain barriers to sexual function including ‘unpredictable function’, ‘problems with urinary control during sexual activity’, ‘limited sensation’ (lower body / penile), ‘positioning barriers’ (e.g., difficulties balancing without the use of assistive devices during intercourse) and ‘psychosocial factors’. Participants provided specific suggestions for improving and making the IIEF more applicable to men with SB. Themes identified may allow the future inclusion of questions about individual, non-partnered experiences, including questions regarding the ways in which people with SB experience sex, and expanding the time frame assessed beyond the last four weeks. This interesting article (Tables 2-4 are particularly worth reading for participants’ subjective responses) could contribute (with further discussion and investigation) to the development of better measures to assess sexual function in men with SB.

‘I Just Haven’t Done Any of That’: Applicability of the International Index of Erectile Function in young man with spina bifida.
Rague JT, Hirsch J, Meyer T, et al.
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Neil Featherstone

Cambridge University Hospitals NHS Foundation Trust (Addenbrookes Hospital).

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