Psychosocial factors affecting quality of life in patients with anorectal malformation and Hirschsprung disease-a qualitative systematic review

Introduction: Little is known about psychosocial and behavioral factors that impact the quality of life of patient's with anorectal malformations (ARM) and Hirschsprung disease (HSCR). We aimed to highlight the psychosocial, emotional, and behavioral themes that affect these patients. Methods: A qualitative literature review of articles published between 1980 and 2019 was performed. Ar-ticles that reported quality of life (QoL) measures not directly related to bowel function and incorporated data on patients aged 0-21 years old were included. Data were separated based on distinct developmen-tal time points. Results: In the neonatal period, parents relayed uncertainty about the future and feeling overwhelmed by lack of social support. Difficulties with anxiety, peer rejection, and behavioral problems were noted in primary grades, while adolescents experienced low self-confidence, poor body image, and depression. Young adults expressed hesitancy to engage in romantic relationships or sexual activity. Lack of long-term follow-up, an incomplete transition to adult healthcare, and lack of psychology services leave young adults without guidance to manage a chronic condition. Conclusion: Multiple psychosocial stressors are present in the lives of ARM and HSCR patients. Provision of developmentally matched medical, psychological, and community-based supports for ARM and HSCR patients and their families can lead to improved QoL. (c) 2021 Elsevier Inc. All rights reserved.

Automated summary

This study identified various psychosocial and behavioral challenges faced by ARM and HSCR patients at different developmental stages. From uncertainty and lack of social support in the neonatal period to anxiety, peer rejection, and behavioral problems in primary grades, as well as low self-confidence, poor body image, and depression in adolescents, and hesitancy in engaging in romantic relationships or sexual activity in young adults, the study highlights the importance of developmentally matched medical, psychological, and community-based supports for these patients and their families to improve their quality of life.