Health‐related quality of life after pediatric liver transplantation: A systematic review

Abstract

With improved survival rates after pediatric liver transplantation (LT), attention is targeting improving the health-related quality of life (HRQOL) as an outcome metric. We conducted a systematic review of the literature to examine HRQOL after pediatric LT, focusing on assessment tools and factors associated with HRQOL. A literature search was conducted through PubMed, Web of Science, Ovid, and Google Scholar for all studies matching the eligibility criteria between January 2004 and September 2016. Titles and abstracts were screened independently by 2 authors and consensus for included studies was achieved through discussion. A total of 25 (2 longitudinal, 23 cross-sectional) studies were reviewed. HRQOL in pediatric LT recipients is lower than healthy controls, but it is comparable to children with chronic diseases or other pediatric solid organ transplant recipients. Domain scores were lowest in school functioning on the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale 4.0 and general health perception on the Child Health Questionnaire, the 2 most commonly used generic HRQOL instruments. Identified predictors of poor HRQOL include sleep disturbances, medication adherence, and older age at transplantation. Two recently validated disease-specific HRQOL tools, Pediatric Liver Transplant Quality of Life tool and the Pediatric Quality of Life Inventory 3.0 Transplant Module, have enabled enhanced representation of patient HRQOL, when used in conjugation with generic tools. Heterogeneity in study design and instruments prevented a quantitative, meta-analysis of the data. In conclusion, continued optimization of durable outcomes for this population mandates prioritization of research focusing on the gap of targeted intervention studies aimed at specific HRQOL subdomains and longitudinal studies to predict the trajectory of HRQOL over time. Liver Transplantation 23 361-374 2017 AASLD.

Evolving Trends in Liver Transplant for Metabolic Liver Disease in the United States

“…Further delay will only result in children being at risk of irreversible damage for longer. There are also psychological and quality‐of‐life benefits to early transplantation . Thus, where transplantation is indicated, it should not be delayed and, ideally, should be scheduled in the preschool period.…”

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

“…Studies on HRQoL in pediatric LT recipients most frequently assess self- and parent-reported HRQoL determinations via the utilization of validated age-appropriate instruments and have explored the associations between demographic or medical variables and HRQoL outcomes [3, 4]. Two systematic reviews evaluating HRQoL outcomes in pediatric LT recipients underscore HRQoL being lower than healthy controls, although 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, although interventional studies targeting strategies to address this decreased HRQoL remain sparse [5].…”

“…Two systematic reviews evaluating HRQoL outcomes in pediatric LT recipients underscore HRQoL being lower than healthy controls, although 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, although 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.…”

Transplanting One Problem for Another

“…2–4 With more patients surviving longer, however, there has also been an increase in the long-term complications of transplantation. 5 In addition to other organ toxicities, allograft loss, and impaired health-related quality of life, 6, 7 a dramatic increase in cancer incidence has been seen in organ transplant recipients. 8, 9 The overall increased incidence of malignancy in patients who have received solid organ transplants has been reported to range from a two- to six-fold increase above the general population, 8, 10 depending on the cohort and type of transplant.…”

“…19, 24 Given the huge economic burden of these oncologic diagnoses on the health care system 25 and quality of life for the transplant recipients and families, 6, 26 the observations of Yanik et al encourage further studies to develop improved strategies for preventing these potentially devastating outcomes.…”