Quality of life after operatively corrected high anorectal malformation: a long-term follow-up study of patients aged 18 years and older.

Fifty-eight patients (median age, 26.0 years; range, 18.1 to 56.9 years) with an operatively corrected high anorectal malformation were evaluated by questionnaire. No patient had normal continence for feces; however, 84% had a socially acceptable defecation pattern. The quality of life (QOL) and general and mental health perception of these patients were evaluated. For social functioning and health perception, items from the medical outcome study (MOS) were used. QOL and health perception were compared with those of the general population. Most aspects of QOL (corrected for age and gender) and mental health did not differ from those of the general population. However, the patient population had lower educational and general health levels (P < .01). Twelve percent felt restricted socially by their handicap, and 24% never had a lasting relationship. Of the patients who had a lasting relationship, 43% noted that the handicap had been disturbing in the relationship. Associated anomalies had no influence on QOL and health perception. QOL, education level, and relationships were affected by fecal incontinence. It is possible that more appropriate psychosocial support, eg, addressing the implications of the handicap on everyday life, would have a positive influence.