Affiliations 

  • 1 Division of Paediatric and Neonatal Surgery, Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia
  • 2 Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia
  • 3 Paediatric Surgery Unit, Department of Surgery, Hospital Sultanah Bahiyah, Alor Setar, Kedah, Malaysia
  • 4 Department of Paediatric Surgery, Sabah Women's and Children's Hospital, Kota Kinabalu, Sabah, Malaysia
  • 5 Department of Paediatric Surgery, Hospital Tunku Azizah, Kuala Lumpur, Malaysia
  • 6 Division of Paediatric & Neonatal Surgery, Department of Surgery, Universiti Malaya Medical Centre, Kuala Lumpur, Malaysia
  • 7 Division of Paediatric and Neonatal Surgery, Department of Surgery, Faculty of Medicine, University of Malaya, 50603, Kuala Lumpur, Malaysia. shireen.nah@um.edu.my
Pediatr Surg Int, 2024 May 03;40(1):119.
PMID: 38700671 DOI: 10.1007/s00383-024-05709-w

Abstract

PURPOSE: Patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) live with long-term impact of these diseases even into adulthood. We aimed to explore the physical, social and emotional impact of these diseases in adolescents and young adults to develop best practices for transition care.

METHODS: We conducted one-on-one in-depth interviews with ARM and HD patients aged  ≥ 11 years who had undergone surgery at four tertiary referral centers. All interviews were audio-recorded and transcribed verbatim. We analyzed transcripts for recurring themes, and data were collected until data saturation was reached. Three researchers independently coded the transcripts for major themes using thematic analysis approach.

RESULTS: We interviewed 16 participants (11 males) between October 2022 and April 2023. Ages ranged from 11 to 26 years. Five major themes emerged: (1) personal impact (subthemes: physical, emotional and mental health, social, school), (2) impact on family, (3) perceptions of their future (subthemes: relationships, career, state of health), (4) sources of support (subthemes: family, peers, partner), and (5) transition care (subthemes: concerns, expectations). Only females expressed concerns regarding future fertility.

CONCLUSION: This study highlights the evolving problems faced by adolescents and young adults with ARM and HD, especially gender-specific concerns. Our findings can inform efforts to provide individualized care.

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.