INTRODUCTION: Common chronic health conditions associated with spina bifida (SB) may impact sexual health among adults in this population, including genital self-image (GSI), but no studies explore this topic. AIM: The primary aim of this study was to provide a preliminary psychometric assessment of the four-item Female Genital Self-Image Scale (FGSIS-4) and the five-item Male Genital Self-Image Scale (MGSIS-5) for use among adults with SB. A secondary aim was to describe the association of GSI with key demographic, health, and sexual experience characteristics. METHODS: An international online survey collecting background and clinical data was administered to adults with SB over 12 months. We assessed internal consistency, construct validity, and convergent validity for GSI. Bivariate regression was used to explore the individual associations of each variable with the FGSIS-4 and MGSIS-5. OUTCOMES: GSI was measured using the 4-item Female Genital Self-Image Scale (FGSIS-4) and the 5-item Male Genital Self-Image Scale (MGSIS-5)
sexual function measures (sexual desire and overall satisfaction) from the Female Sexual Function Index and the International Index of Erectile Function
and health-related quality of life with Quality of Life Assessment in Spina Bifida for Adults. RESULTS: Participants (N = 217 women and N = 146 men) were primarily heterosexual and had a median partial-to-full college education. Half of all the participants were in a relationship and living independently. A third of both men and women were community ambulators, and a quarter of both reported full genital sensation. About half of the sample (women: 47.1%
men: 46.2%) reported clean intermittent catheterization (CIC). Both scales demonstrated good internal reliability (FGSIS-4: 0.845
MGSIS-5: 0.877) and a single-factor construct structure. Higher FGSIS-4 and MGSIS-5 scores correlated positively with sexual desire overall sexual satisfaction, health-related quality of life, and urinary continence but did not vary with using CIC. CLINICAL IMPLICATIONS: Because GSI negatively impacts sexual health and sexual function, clinicians treating patients with SB should consider discussing GSI as part of routine care. STRENGTHS AND LIMITATIONS: Although this research measured women's and men's GSI behavior in a large international sample of adults with SB, it is limited by its cross-sectional and retrospective design, as well as by its non-clinical convenience sample. CONCLUSION: The FGSIS-4 and MGSIS-5 show preliminary desirable psychometric properties for the measurement of GSI in the SB population.