Knowledge about the functional outcome in adults with anorectal malformations (ARM) is essential to organize structured transition to adult care for this patient group.
The aim of this study was to investigate the functional outcome and quality of life in adults with ARM characterized according to the Krickenbeck classification.
Of 257 patients diagnosed with ARM at our institution 1961-1993, 203 patients could be traced and were invited to participate in the study. A validated questionnaire was used to assess bowel function and SF-36 for quality of life (QoL). One hundred and thirty-six patients replied (67%) and were compared with population-based sex and age-matched controls.
The study was performed at a tertiary referral center for both pediatric and adult colorectal surgery.
Main outcome measures:
Outcome in nine incontinence-related parameters, ten constipation-related, six urogenital function-related, and thirteen QoL parameters were assessed in the patients and compared to the outcome of controls as well as to the type of ARM according to the Krickenbeck classification.
The ARM-patients had an inferior outcome (P<0.05) for all incontinence parameters, 8 of 10 parameters for constipation, 2 of 6 for urogenital function and 7 of 13 QoL parameters. Patients with recto-bulbar and vestibular fistulas had the worst outcome. Forty-four patients (32%) reported incontinence of stool at least once a week and 16 (12%) had a permanent colostomy.
The functional outcome and quality of life in adults with ARM is closely related to the type of malformation. A large proportion of the patients have persistent fecal incontinence, constipation and sexual problems that have a negative influence on their quality of life. Structured multidisciplinary follow-up of adults with anorectal malformations by pediatric and colorectal surgeons, as well as urologists and gynecologists is therefore advocated.