Independence does not come with the method--treatment of neurogenic bowel dysfunction in children with
Peter Wide1, Gunilla Glad Mattsson1, Peder Drott1
1Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
Insights
Antegrade colonic enemas (ACE) and transanal irrigation (TAI) are effective bowel management options for children with myelomeningocele (MMC). Parents reported higher satisfaction with ACE, while independent toileting improved quality of life for children regardless of the method used.
Area of Science:
- Pediatric Gastroenterology
- Neuro-Urology
- Quality of Life Research
Background:
- Myelomeningocele (MMC) often leads to bowel dysfunction, impacting children's quality of life.
- Effective bowel management is crucial for independence and well-being in children with MMC.
- Current bowel regimes include antegrade colonic enemas (ACE) and transanal irrigation (TAI).
Purpose of the Study:
- To compare the effectiveness of ACE and TAI in children with MMC.
- To evaluate patient and parent satisfaction with different bowel regimes.
- To assess the impact of bowel management on faecal incontinence, independence, and quality of life.
Main Methods:
- A questionnaire-based study involving 172 children (aged 7–16) with MMC across three Scandinavian centers.
- Inclusion of the Pediatric Quality of Life Inventory (PedsQL 4.0™) to measure health-related quality of life.
- Response rate of 62% from participants using either ACE or TAI.
Main Results:
- Parents reported significantly higher satisfaction with ACE (30% of participants) compared to TAI (47% of participants).
- Children and parents in the ACE group noted more complete bowel evacuation than the TAI group.
- No significant differences were observed in faecal incontinence or independent toileting between the two methods; however, children achieving independent bowel emptying reported higher quality of life.
Conclusions:
- Both TAI and ACE are effective but time-consuming bowel management strategies for children with MMC, often requiring assistance.
- ACE demonstrates higher parental satisfaction compared to TAI.
- Supporting children to achieve independent toileting is paramount for enhancing their quality of life, irrespective of the specific bowel management method employed.
Aim:
The aim was to evaluate and compare different bowel regimes with regard to satisfaction, faecal incontinence and independence, and the relationship to quality of life among children with myelomeningocele (MMC).
Methods:
A questionnaire, including the health-related quality of life instrument PedsQL 4.0™, was sent to all children aged seven to 16 years (n = 172) with MMC, treated at two centres in Sweden and one in Norway. The three centres cover a third of the population in the two countries. The response rate was 62%.
Results:
Parents of children (30%) using antegrade colonic enemas (ACE) reported higher satisfaction (p = 0.01) than the parents of those (47%) using transanal irrigation (TAI). The children reported no significant difference. Children and parents in the ACE group reported more complete evacuation of the bowels than the TAI group. No significant difference was found in faecal incontinence or independent toileting. The children (40%) who emptied their bowels independently reported a higher quality of life. Children using TAI or ACE spent around one hour on the toilet at every bowel emptying.
Conclusion:
TAI and ACE are effective treatments, but time-consuming and difficult to perform independently. Higher parental satisfaction is obtained with ACE. Irrespective of method the children who can use the toilet independently report a higher quality of life, which makes efforts to support independence valuable.
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