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Published on: April 26, 2019
Life after definitive treatment for children with Hirschsprung's disease
H Athanasakos1, J Starling, F Ross
1Department of Academic Surgery, Children's Hospital at Westmead.
Insights
Long-term outcomes for Hirschsprung
Area of Science:
- Pediatric Surgery
- Gastroenterology
- Psychology
Background:
- Hirschsprung's Disease (HD) is a congenital condition affecting the large intestine.
- Surgical correction is the standard treatment for HD.
- Long-term functional and psychosocial outcomes require further investigation.
Purpose of the Study:
- To evaluate long-term outcomes post-surgical correction for Hirschsprung's Disease.
- To assess the psychosocial impact of HD on affected children and their families.
Main Methods:
- A cohort of 72 children and young adults (1-24 years) with HD and their families were studied.
- A condition-specific questionnaire assessed functional and psychosocial outcomes.
- Parental perceptions of long-term condition impact were gathered.
Main Results:
- Faecal soiling was the most common functional issue (76.3%) post-surgery.
- Younger children (<12 years) experienced more distress and family difficulties (73.6%) compared to older individuals (>12 years).
- Despite challenges, young adults with HD (>12 years) reported confidence (62.5%) and hope for the future; parental marital relationships were impacted in 12.5% of cases.
Conclusions:
- Functional issues and psychosocial distress in Hirschsprung's Disease improve with age and support.
- Addressing condition-specific challenges, like faecal soiling, is crucial for 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.
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