Quality of life for adult women born with bladder and cloacal exstrophy: A long-term follow up

Abstract Objective To assess the quality of life of 23 female patients over 18 years of age treated and followed in the same institution. Methods Fifty questions were sent to this group of patients covering their uro-gynaecological history, education and profession, social life and related psychological issues, sexual life and fertility. All replies were kept anonymous. Results Seventeen patients (74%) replied. Urine incontinence at various degrees was found in 65%. Genital prolapse was reported in 29.5%. Students accounted for 41%; 59% were actively working with a satisfactory professional life in 82% of cases. Seventy-six per cent did not consider that exstrophy affected their professional life, and 76% were happy with their social life. Psychological distress was reported by 41%, and the symptoms are detailed. Sixty-four per cent were married or had a stable partner. Seventy-six per cent were active sexually, all declaring heterosexual relations. Eighty-eight per cent had periods. Four pregnancies were reported and morbidity during gestation is described. All children were born by Caesarean section and were normal. These results are discussed and compared with the literature. Conclusion Despite many hurdles, this group of patients can expect a subnormal social, family and professional life. Urinary incontinence and poor body image were the most important factors altering quality of life.