Quality of life in female patients with bladder exstrophy-epispadias complex: Long-term follow-up

Questionnaire studies on BEEC consistently report a high rate of patients not answering, 43% in the present study. The rarity of the disease determines a small sample size, which diminishes statistical power and could potentially conceal small differences with controls. Despite these limitations, the present findings are consistent with previous studies on BEEC with validated QoL questionnaires: adult women with BEEC suffer psychosocial impact mainly from incontinence, and also from gynecological complications, but their resilience and coping mechanisms allow them to achieve a quasi-normal QoL. Female patients with BEEC reported a normal QoL in five of eight items in the SF-36 questionnaire. Urinary incontinence was the main factor for the moderately decreased QoL according to specific questionnaires.Mean (range) age, years26 (18-50)Previous historyTotal number of surgeries, mean (range)13 (3-16)Initial surgery, nPrimary closure16Cystectomy + ureterosigmoidostomy2Cystectomy + cutaneous ureterostomy1Osteotomy8Bladder enlargement or reservoirIleal reservoir33%Colonic reservoir67%Mitrofanoff conduit67%Lithiasis, nRenal2Bladder4Vesicoureteral reflux36%Chronic renal failure6%Genital prolapse31%Rectal prolapse15%Continence status, n (%)Normal continence12 (63)Occasional leak7 (37)Mild incontinence, little QoL impact, n5Moderate incontinence, big QoL impact, n2Continence management, nYoung-Dees cervicourethroplasty7Silimed perimitrofanoff constrictor3Bulking agents4Closed bladder neck7Autocatheterization14Incontinent6Sexual function and fertilitySexually active84%Not in a relationship10%Dyspareunia42%C-section, n5Abortions, n3Education level, nHigh school11Higher education8Occupational status, nActive workers12Unemployed5Invalidity status2