Health Related Quality of Life of Caregivers of Children and Adolescents With Phenylketonuria: A Systematic Review

Abstract

Introduction. Caregivers of children with chronic illness are at risk of having impairment in their quality of life (QOL). We systematically reviewed the available literature related to the Health Related Quality Of Life (HRQOL) of caregivers of children with Phenylketonuria (PKU). Methods. We comprehensively searched in electronic databases including Scopus, Science Direct, CINAHL, Medline, PubMed, Google scholar, and ProQuest. The search criteria included studies with samples more than one, children suffering from PKU, exploring parents or primary caregiver’s HRQOL, published from 2010 to 2020, full article available for download and published in English. Eight studies including 5 cross sectional studies, 1 open label trial, and 2 surveys were systematically reviewed. Results. Seven out of 8 studies have established a negative correlation between PKU and parent’s HRQOL in at least 1 of the domains. In one study, the HRQOL of parents is higher than their population norms. Conclusion. Most of the caregivers had poor to moderate HRQOL. More studies are required to explore HRQOL of caregivers of children with PKU using similar tools and outcome measures addressing all the domains of HRQOL in order to have more clarity on the impact of PKU on caregiver’s HRQOL. Interventional studies might help in improving the HRQOL of caregivers.

Commentary: Hospital quality of life for children: development of a new measurement tool for hospitalised children

“…As a member of a paediatric-nursing faculty, I have published manuscripts related to quality of life in children and adults (BNP et al, 2022;Jayabharathi & Judie, 2014;Kangeswari and Arulappan, 2022;Pandarakutty et al, 2020;Renford et al, 2020;Shaji Thomas et al, 2021;Thomas et al, 2017) and I have two more quality-of-life research studies in children in the pipeline therefore I feel well equipped to offer a commentary on this paper. During my publication journey, I learnt about various quality-of-life measurement instruments across different populations from Journal of Research in Nursing 29(1) various ethnic and linguistic backgrounds.…”