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.
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.