Quality of Life Outcomes in Primary Caregivers of Children with Esophageal Atresia

Sharman P Tan Tanny; Misel Trajanovska; Frank Muscara; John M Hutson; Stephen Hearps; Taher I Omari; Warwick J Teague; Sebastian K King

doi:10.1016/j.jpeds.2021.07.055

Quality of Life Outcomes in Primary Caregivers of Children with Esophageal Atresia

J Pediatr. 2021 Nov:238:80-86.e3. doi: 10.1016/j.jpeds.2021.07.055. Epub 2021 Jul 28.

Authors

Sharman P Tan Tanny¹, Misel Trajanovska², Frank Muscara³, John M Hutson⁴, Stephen Hearps⁵, Taher I Omari⁶, Warwick J Teague⁴, Sebastian K King⁴

Affiliations

¹ Department of Paediatric Surgery, The Royal Children's Hospital, Parkville, Victoria, Australia; F. Douglas Stephens Surgical Research Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia; Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia. Electronic address: sharman.tantanny@rch.org.au.
² F. Douglas Stephens Surgical Research Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia; Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia.
³ Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia; Brain and Mind Research Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia.
⁴ Department of Paediatric Surgery, The Royal Children's Hospital, Parkville, Victoria, Australia; F. Douglas Stephens Surgical Research Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia; Department of Paediatrics, The University of Melbourne, Parkville, Victoria, Australia.
⁵ Brain and Mind Research Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia.
⁶ College of Medicine & Public Health, Flinders University, Bedford Park, South Australia, Australia.

PMID: 34329689
DOI: 10.1016/j.jpeds.2021.07.055

Abstract

Objective: To investigate the quality of life (QoL) impact on primary caregivers of children with esophageal atresia.

Study design: We used a prospective cohort study design, inviting primary caregivers of children with esophageal atresia to complete the following questionnaires: Parent Experience of Child Illness (PECI), Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety, PROMIS Depression, 12-Item Short Form Survey (SF-12), and Pediatric Quality of Life Inventory (PedsQL). The PECI, PROMIS Anxiety and Depression, and SF-12 assessed caregiver QoL, and the PedsQL assessed patient QoL. Patients with Gross type E esophageal atresia served as controls.

Results: The primary caregivers of 100 patients (64 males, 36 females; median age, 4.6 years; range, 3.5 months to 19.0 years) completed questionnaires. The majority (76 of 100) of patients had Gross type C esophageal atresia. A VACTERL (vertebral anomalies, anorectal malformation, cardiac anomalies, tracheoesophageal fistula, renal anomalies, limb anomalies) association was found in 30, ≥1 esophageal dilatation was performed in 57, and fundoplication was performed in 11/100. When stratified by esophageal atresia types, significant differences were found in 2 PECI subscales (unresolved sorrow/anger, P = .02; uncertainty, P = .02), in PROMIS Anxiety (P = .02), and in SF-12 mental health (P = .02) and mental component summary scores (P = .02). No significant differences were found for VACTERL association, nor esophageal dilatation. Requirement for fundoplication resulted in lower SF-12 general health score, and lower PedsQL social and physical functioning scores.

Conclusions: We have demonstrated that caring for a child with esophageal atresia and a previous requirement for fundoplication impacts caregiver QoL.

Keywords: caregiver; children; esophageal atresia; quality of life.

MeSH terms

Adolescent
Caregiver Burden / psychology*
Child
Child, Preschool
Esophageal Atresia / nursing*
Esophageal Atresia / psychology
Female
Humans
Infant
Male
Parents / psychology
Prospective Studies
Quality of Life*
Surveys and Questionnaires