More harm than good? Parental perspectives on dilatations in anorectal malformations

TL;DR

This study explores the psychological impact of anal dilations on children with anorectal malformations and their parents, finding significant distress and questioning the routine use of this procedure.

Contribution

The study provides new insights into the psychosocial burden of anal dilations from parental perspectives.

Findings

A significant proportion of parents reported emotional distress and child discomfort during dilations.

Home-based dilations were described as distressing for both parents and children.

28.1% of parents perceived a negative psychological impact from the procedure.

Abstract

Post-operative management for anorectal malformations (ARM) following surgical repair traditionally includes routine anal dilations (AD) to prevent anal strictures. Recent evidence questions its necessity and highlights psychological distress in patients and parents. We aimed to evaluate dilations’ psychosocial impact on both children and caregivers.

Telephone questionnaire was performed to parents of ARM patients who underwent repair between 2009-2023, assessing their perceptions on AD and its’ child impact. Patient demographics, ARM classification, AD timing, and post-operative complications were collected.

Thirty-two caregivers participated. Median age at surgery was 5 months; at survey, 10.5 years. ARM with perineal fistula was the most common subtype. AD were performed preoperatively in 21.9%. Post-op, 15,6% did weekly calibrations, 62,5% daily AD. One-quarter of dilations/calibrations were performed by a surgeon in parents’ presence, of whom 62.5% reported emotional distress, 75% perception of child discomfort. Home-based AD parents reported difficulty in 54.2%, with two-thirds needing assistance, describing it as distressing for both themselves and their children. Overall, 28.1% perceived a negative psychological impact.

Our findings highlight the significant psychological burden associated with AD. Given increasing evidence of its lack of benefit and psychological impact, our results support a careful re-evaluation of AD routine use.

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