Life after definitive treatment for children with Hirschsprung's disease.

PURPOSE: The aim of this study was to investigate the long-term outcomes after definitive surgical correction for children with Hirschsprung's Disease (HD) and the psychosocial impact HD has on the child and family.

METHODS

A clinical-based database of seventy-two children and young people aged between one to twenty-four years with HD, along with their families were investigated. This study involved the development of a condition-specific questionnaire in order to assess the functional and psychosocial outcomes for children with HD at different age groups, combined with parental perception of their child's condition in the long-term.

RESULTS

The greatest functional problem after definitive surgery for HD was faecal soiling (n = 29/38: 76.3%). Children < or = 12 years experienced more embarrassment, distress/discomfort and family difficulties (n = 53/72; 73.6%) due to bowel dysfunctioning (such as faecal soiling) in comparison to children 12 years (n = 19/72; 26.3%) (p < 0.05). Young adults with HD (> 12 years) remained confident and 62.5% hopeful about their future with HD. Nine (12.5%) of the parents reported that HD had a negative impact on their marital relationship due to the daily stressors. Yet, 58.3% (n = 42) families remain confident and 70.8% (n = 42) hopeful about their child's future with HD.

CONCLUSION

Bowel functioning and psychosocial distress improves with increasing age and parental and medical professional support. Psychosocial difficulties found in the child and family with HD are condition-specific--thus improving complications such as faecal soiling will further enhance better psychosocial adjustment.