Pediatr Gastroenterol Hepatol Nutr.  2022 Nov;25(6):489-499. 10.5223/pghn.2022.25.6.489.

Pediatric Liver Transplantation: Caregivers’ Quality of Life

Affiliations
  • 1Department of Pediatric Gastroenterology, Brasília José de Alencar Children’s Hospital, Brasília, Brazil
  • 2Department of Pediatric Hepatology and Liver Transplantation, University of Sao Paulo School of Medicine, São Paulo, Brazil

Abstract

Purpose
The survival rate of pediatric patients undergoing liver transplantation has increased considerably. Despite this, the period after transplantation is still complex and poses several challenges to the recipient’s family, which is responsible for care management. Recently, more attention has been paid to the impact of this complex procedure on the quality of life of caregivers. Hence, this study is aimed at assessing the quality of life of caregivers of patients who have undergone liver transplantation and the aspects that influence it.
Methods
This was an observational and cross-sectional study. From November 2020 to January 2021, short-form-36 questionnaires and additional questions were given to the main caregivers of children and adolescents who underwent pediatric liver transplantation.
Results
Thirty-eight questionnaires were completed and the results revealed a lower quality of life in comparison to Brazilian standards, primarily in the mental domains (41.8±14.1 vs. 51.1±2.8; p<0.001). It did not show a significant association with socioeconomic or transplant-related factors, but it did show a negative impact on parents’ perception of the child’s health. Parents who reported worse health status for their children had a lower mental quality of life (44.1±13.8 vs. 33.3±12.6; p<0.05).
Conclusion
The caregivers of transplanted children have a lower quality of life than those of the local population. Psychological assistance should be routinely provided to parents for long-term follow-up to mitigate potential negative effects on the transplanted child’s care.

Keyword

Liver transplantation; Liver; Pediatrics; Quality of life; Caregivers
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