Anorectal malformations: what happens in adulthood?

OBJECTIVE To comprehensively evaluate the outcomes in adults who were born with anorectal malformations (ARMs), to assess the relationships between the major types of ARM and outcomes, and to examine the relationships between bowel and urinary function and sexual well-being, as advances in surgical treatment for ARMs have led to more patients surviving into adult life, and adult data on urinary and bowel function are scant, with even less known about the effect of diagnosis and treatment on sexual and reproductive function. PATIENTS AND METHODS In all, 74 adult patients with a diagnosis of ARM confirmed by review of paediatric medical records completed a series of validated questionnaires on urinary and bowel function, body esteem, sexual well being, fertility and overall quality of life. RESULTS There were high levels of urinary and bowel incontinence for both men and women. A high ARM was associated with a greater degree of incontinence. Both men and women scored more poorly than controls on the body esteem, sexual well-being and quality-of-life assessments. Urinary and bowel incontinence was associated with poorer sexual well-being. CONCLUSIONS Bowel and urinary outcomes in adults appear to be worse than suggested in paediatric reports, with high levels of both urinary and fecal incontinence. Poorer outcomes appeared to affect sexual well-being adversely. To date, attention to issues during transition from childhood to adulthood, particularly concerns about sexual function and well-being, has been conspicuous by its absence. Patient-focused multidisciplinary care during this transition must address these issues, which are central to an acceptable quality of life.