Health-Related Quality of Life after Pediatric Liver Transplantation: A Qualitative Analysis of the Perspectives of Health Care Providers.

Mar Miserachs,Vicky Lee Ng,David B Nicholas,Anthony R Otley

doi:10.1155/2017/5274923

Abstract

With improved survival outcomes after pediatric liver transplantation (LT), health-related quality of life (HRQoL) is an important outcome metric. Understanding the elements contributing to HRQoL after LT in children would enable more targeted strategies towards optimizing best outcomes. This qualitative study aimed to explore health care providers (HCP) perceptions about HRQoL after pediatric LT. Thirteen experienced HCP participated in two focus group discussions. Data analysis via a thematic analysis approach revealed 4 major themes: “LT as a facilitator of better HRQoL,” “coping and adapting to LT,” “living with a transplanted liver,” and “the family context.” HCP identified elements that both enhance (improved physical health, peer relationship, and activities of daily living) and challenge (need for immunosuppression, transplant follow-up, and restrictions) the multidimensional domains of HRQoL. HCP perceived LT to be a stressful life-changing event for children and their families. Patients and their parents' ability to cope and adjust positively to LT was perceived as a key contributor to better HRQoL. HCP perspective highlights the importance of promoting psychosocial support and a family-centered care delivery model towards the overarching goal of optimizing durable outcomes.

Highlights

Advances in surgical, anesthesia, and intensive-care techniques, as well as early and long-term medical aftercare, have led to current excellent patient survival rates following pediatric liver transplantation (LT) [1]
Concepts emerging from analysis spanned four domains: (1) LT as a facilitator of better Health-Related Quality of Life (HRQoL); (2) coping and adapting to LT; (3) living with a transplanted liver; and (4) the family context
health care providers (HCP) dedicated to the care of pediatric LT patients participating in this study described the family burden related to caregiving demands, mobility impositions, social restrictions, and/or financial losses due to work absenteeism as key contributory variables to poor family functioning among families with a child who has undergone a LT

Summary

Introduction

Anesthesia, and intensive-care techniques, as well as early and long-term medical aftercare, have led to current excellent patient survival rates following pediatric liver transplantation (LT) [1]. With long-term survival the rule rather the exception, patient-reported outcomes such as the construct of Health-Related Quality of Life (HRQoL) have become the focus of quantitative clinical research [2]. Two systematic reviews evaluating HRQoL outcomes in pediatric LT recipients underscore HRQoL being lower than healthy controls, comparable to children with chronic diseases or other pediatric solid organ transplant recipients [5, 6]. The more recent systematic review by Parmar et al [5] highlighted the contribution to the field of newer disease-specific tools, interventional studies targeting strategies to address this decreased HRQoL remain sparse [5]. Additional ways to better understand the challenges experienced by this patient population are needed to enhance our ability to derive novel strategies

Objectives

Methods

Results

Discussion

Conclusion