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Health-Related Quality of Life in Children With Chronic Illness Compared to Parents: A Systematic Review
Cheryl A Hall1, Carly Donza, Sarah McGinn
1Department of Physical Therapy, School of Health Professions, New York Institute of Technology, Old Westbury, New York.
Insights
Parents and children with chronic illnesses often disagree on quality of life, especially regarding social and emotional well-being. This impacts age-appropriate activity participation for pediatric patients.
Area of Science:
- Pediatric Health
- Quality of Life Research
- Child Psychology
Background:
- Chronic illness significantly impacts children's lives.
- Understanding children's and parents' perspectives on quality of life is crucial for effective care.
- Participation in age-appropriate activities is vital for child development.
Purpose of the Study:
- To systematically review quality-of-life issues affecting chronically ill children's participation in activities.
- To identify discrepancies between children's and parents' reports on quality of life.
- To inform healthcare practices for personalized pediatric care.
Main Methods:
- Systematic review of existing literature.
- Analysis of studies reporting on quality of life in chronically ill children.
- Comparison of parent and child self-reported data.
Main Results:
- Significant disagreement between parents and children on social and emotional functioning was common.
- The Pediatric Quality of Life Inventory (PedsQL) 4.0 showed the most frequent poor agreement in these areas.
- Children generally reported a better quality of life than their parents perceived.
Conclusions:
- Parents tend to perceive lower quality of life in chronically ill children compared to the children's own reports.
- Discrepancies in perceived quality of life highlight the need for tailored interventions.
- Addressing these differing perspectives can lead to more personalized functional goal development for pediatric patients.
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.
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