Long-Term Quality of Life and Functional Outcomes in Patients With Anorectal Malformations: A Retrospective...

Introduction Anorectal malformations (ARMs) are congenital conditions requiring surgical correction. Despite surgical intervention, patients often experience persistent fecal and urinary dysfunction, significantly impacting their quality of life (QoL). This multicenter retrospective study aimed to assess QoL in ARM patients, identify factors influencing QoL deterioration, and propose improved management strategies. Methods We retrospectively analyzed data from 39 ARM patients who underwent surgery between 1999 and 2019 at two Belgian hospitals. Patients completed the Hirschsprung's Disease Anorectal Malformation Quality of Life Questionnaire (HAQL). We also reviewed their medical records. Descriptive statistical analysis was performed. Results At a median follow-up of 106 months, functional outcomes showed high rates of constipation (87%), fecal incontinence (54%), and fecal soiling (87%). Fecal incontinence was more prevalent in patients with bulbar rectourethral and recto-vesical fistulas. Postoperative complications occurred in 72% of patients, primarily in those with high ARMs, and correlated with increased constipation and abdominal pain. Management gaps were observed: only 47% of constipated patients and 56% of incontinent patients underwent anorectal manometry, and only 50% of constipated patients utilized physiotherapy. QoL assessment revealed persistent digestive functional disorders and physical symptoms across age groups, which improved with age. However, emotional and body image issues persisted into adulthood. Conclusion Patients with ARMs frequently experience significant functional digestive disorders and impaired QoL. Suboptimal management, particularly regarding the use of anorectal manometry and physiotherapy, contributes to these challenges. A long-term, multidisciplinary follow-up is crucial. This follow-up should include systematic dietary support, perineal rehabilitation, and targeted interventions guided by anorectal manometry to improve QoL in this population.