Preliminary investigation into quality of life, psychological distress and social competence in children with cloacal exstrophy

Purpose: Cloacal exstrophy is a complex multisystem anomaly. Due to ambiguous genitalia gender assignment or reassignment is common. The psychological, emotional and behavioral impact of this condition has rarely been investigated. Materials and Methods: We recruited 8 children with cloacal exstrophy born with genital ambiguity and a control group of 12 with cloacal anomalies born without genital ambiguity were recruited via urology-endocrine clinics at Great Ormond Street Hospital for Children. Patient age was 5 to 18 years (average 11.3). The child behavior checklist, child health related quality of life and social cognition questionnaire were administered to assess perceived levels of social competence and adjustment, emotional and behavioral distress, and perceived quality of life. Results: Social and behavioral competence as well as psychological problems were comparable with normative data for the 2 groups. There were no statistically significant differences in the 2 groups on any competence, problem or social adjustment scale. A quality of life measure again revealed no significant differences in the groups. The scores obtained were comparable with those reported for other chronic illnesses. Conclusions: Results suggest that being born with cloacal exstrophy or anomaly and gender assignment or reassignment does not necessarily result in childhood psychological, emotional or behavioral distress and/or problems, lower levels of social competence or subjective reports of poor quality of life. It is suggested that longitudinal and larger studies are required to assess the long-term implications of this condition.