Assessment of long-term quality of life, bowel and voiding function outcomes in patients with anorectal malformation at a single UK centre
- PMID: 38565744
- DOI: 10.1007/s00383-024-05684-2
Assessment of long-term quality of life, bowel and voiding function outcomes in patients with anorectal malformation at a single UK centre
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.
Keywords: Anorectal malformation; Bowel function; Children; Outcomes; Paediatric; Quality of life; Urinary function.
© 2024. Crown.
References
-
- deVries PA, Peña A (1982) Posterior sagittal anorectoplasty. J Pediatr Surg 17(5):638–643. https://doi.org/10.1016/S0022-3468(82)80126-7 - DOI - PubMed
-
- Levitt MA, Peña A (2007) Anorectal malformations. Orphanet J Rare Dis 2(1):33. https://doi.org/10.1186/1750-1172-2-33 - DOI - PubMed - PMC
-
- Giuliani S, Grano C, Aminoff D, Schwarzer N, Van De Vorle M, Cretolle C, Haanen M, Brisighelli G, Marzheuser S, Connor M (2017) Transition of care in patients with anorectal malformations: consensus by the ARM-net consortium. J Pediatr Surg 52(11):1866–1872. https://doi.org/10.1016/j.jpedsurg.2017.06.008 - DOI - PubMed
-
- Zheng H, Liu G, Liang Z, Chen Y, Wen Z, Yu J, Xu X, Liang H, Wang Y (2019) Middle-term bowel function and quality of life in low-type anorectal malformation. Ital J Pediatr 45(1):98. https://doi.org/10.1186/s13052-019-0701-3 - DOI - PubMed - PMC
-
- Wigander H, Nisell M, Frenckner B, Wester T, Brodin U, Öjmyr-Joelsson M (2019) Quality of life and functional outcome in Swedish children with low anorectal malformations: a follow-up study. Pediatr Surg Int 35(5):583–590. https://doi.org/10.1007/s00383-018-04431-8 - DOI - PubMed - PMC
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