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Health-Related Quality of Life in Children With Chronic Illness Compared to Parents

A Systematic Review

Hall, Cheryl A. PT, DHSc, PCS; Donza, Carly DPT; McGinn, Sarah DPT; Rimmer, Alexandra DPT; Skomial, Suzanna DPT; Todd, Emily DPT; Vaccaro, Francesco DPT

doi: 10.1097/PEP.0000000000000638
SYSTEMATIC REVIEWS
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Purpose: The purpose of this systematic review is to identify quality-of-life issues that affect participation in age-appropriate activities in chronically ill children, as reported by the children and their families.

Summary of Key Points: Social and emotional functioning scores on the Pediatric Quality of Life Inventory (PedsQL) 4.0 were found to have the greatest frequency of poor agreement between parents and children in 4 of the 6 studies included in this review, suggesting parents and children have wide variation in their assessment in these areas of psychosocial function.

Conclusions: Cumulative evidence appears to indicate that parents of children with chronic illness perceive their children as having a poorer quality of life than the children report for themselves.

Recommendations for Clinical Practice: Identifying differences and commonalities between these reports can guide health care practitioners to specific activities that should be the focus of caring for children; specifically, functional goal development can become more personalized and appropriate.

This systematic review identifies quality of life issues that affect participation in age-appropriate activities and interactions among health care practitioners, children who are chronically ill, and their families.

Department of Physical Therapy, School of Health Professions, New York Institute of Technology, Old Westbury, New York.

Correspondence: Cheryl A. Hall, PT, DHSc, PCS, Program in Physical Therapy, New York Institute of Technology, 500 Bldg, Room 501, Old Westbury, NY 11568 (chall@nyit.edu).

At the time this article was written, Cheryl A. Hall was the faculty research advisor for this capstone project for students in their final year of the Doctor of Physical Therapy Program at New York Institute of Technology.

The authors declare no conflicts of interest.

Copyright © 2019 Academy of Pediatric Physical Therapy of the American Physical Therapy Association