Assessment of long-term quality of life, bowel and voiding function outcomes in patients with anorectal malformation at a single UK centre
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In brief
In brief
This retrospective study evaluates long-term outcomes in 94 pediatric ARM patients, finding significantly impaired quality of life, bowel continence, and voiding function compared to healthy controls. Over half experienced poor bowel function, with worse outcomes in high-type malformations and delayed diagnosis cases.
- ARM patients show significantly impaired quality of life, bowel function (57% poor), and voiding function (32% poor) compared to healthy controls.
- High-type ARM and delayed diagnosis correlate with worse bowel continence outcomes, emphasizing importance of early detection and classification.
- 38% of ARM patients require ancillary aids for bowel/bladder management, which significantly reduces quality of life scores.
- Long-term functional monitoring beyond initial surgical repair is essential, as deficits persist into childhood and adolescence.
- Multidisciplinary support addressing both physical function and psychosocial impact is needed for ARM patients throughout development.
Written by the GCMD Library team from the article.
Abstract
Aims
Assess long-term quality of life (QoL), bowel and voiding function in anorectal malformation (ARM) paediatric patients.
Method
Retrospective review of ARM patients between 2007 and 2020 was performed. QoL (all patients), bowel and voiding function (> 5 yo) were assessed using the paediatric quality of life inventory (PedsQL), paediatric incontinence and constipation score (PICS) and dysfunctional voiding scoring system (DVSS), respectively.
Results
There were 122 patients (49% female, 85 > 5 yo) with ARM. Two had died, four refused, twenty-two were non-contactable, leaving ninety-four patients (65 > 5 yo) included. Mean age was 89 months (19–183), and follow-up was 86 months (13–183). Patients had significantly poorer scores for QoL, bowel and voiding function compared to published healthy controls. 57% had poor bowel function, 32% had poor voiding function and 38% required ‘ancillary aids’ to facilitate function. Patients using ‘ancillary aids’ for voiding function had a significantly lower QoL (parent: 62 vs 77; p = 0.01, patient: 66 vs 79; p = 0.05). Bowel continence was worse in those with high vs low ARM (13 vs 20, p = 0.004) and timely vs delayed diagnosis (17 vs 24, p = 0.04).
Conclusion
Patients with ARM have significantly worse QoL, bowel and voiding function than normal healthy controls. There is a need for long-term monitoring of function and further support for these children.
Level of evidence
III.