Urological, sexual and quality of life evaluation of adult patients with exstrophy-epispadias-complex: long-term results from a Dutch cohort

Abstract Objective To assess urological function, sexual function, and quality of life in patients with exstrophy or epispadias. Little is known regarding these outcome in adult patients; our aim is to determine where improvements are needed for long-term management. Methods The study population comprised adult (>18 years) patients. Demographic data were gathered and patients were asked to fill out four validated questionnaires: 1) ICIQ-UI regarding continence; 2) IPSS for men and ICIQ-FLUTS for women regarding LUTS; 3) SF-12 regarding quality of life; 4) IIEF for men and FSFI for women regarding sexual function. Results Seventeen patients were included (9 men and 8 women) with a median age of 36 years (range 19-73). Median score on the ICIQ-UI form was 5/21. Median IPSS score was 7/35 and median quality of life score was 1 (=pleased). Median scores per domain within ICIQ-FLUTS were 7 for storage, 0 for voiding and 6 for urinary incontinence with bother scores of 4, 0 and 2.8 respectively. Scores for SF-12 in the study population were comparable with those of the Dutch population, except for Physical Component Summary (PCS) in women. For sexual function, no difference was found between those in the general population and our participants except for the domain ‘pain’ in FSFI. Conclusions Adult patients with exstrophy or epispadias have a high rate of incontinence and LUTS with relatively low to some degree of bother. When compared with the general population, quality of life and sexual function of our patients were more or less similar.