Purpose: Only a few patients with anorectal malformations (ARM) have satisfactory bowel functions. Studies of ARM have reported psychosocial problems in up to 73% of patients. The aim of the current study was to document the psychosocial needs of patients with ARM.
Methods: Between June 2004 and September 2005, 44 patients with ARM were treated; the sample included 30 patients (23 males and 7 females) aged 4-17. To focus on potential psychosocial strain, a comprehensive grading system with a sophisticated perspective of continence, associated malformations, number of surgical interventions and postoperative complications was introduced. For psychosocial screening, the following instruments were used: German "Basis-Dokumentation" (BADO), Impact on Family Scale (IFS), the Strengths and Difficulties Questionnaire (SDQ). All families assessed their own psychosocial needs. An extensive psychosocial programme was provided.
Results: Twenty-three patients were suffering severe burden according to the comprehensive grading system. Nearly half of the families reported increased financial stress, and one-third reported emotional or hyperactivity problems of the child. More than 70% confirmed psychosocial need.
Conclusions: Paediatric surgeons should promote psychosocial support for all patients who suffer severe forms of ARM or its numerous associated malformations as well as for patients undergoing numerous surgical interventions or having many postoperative complications.