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The effect of parental mental health on proxy reports of health-related quality of life in children with sickle cell disease. Pediatr Blood Cancer 2010 Oct;55(4):714-21 PMID: 20589646 PMCID: PMC3835190

Pubmed ID

20589646

DOI

10.1002/pbc.22651

Abstract

BACKGROUND: The objectives of this study were to evaluate factors that influence agreement between parent-proxy and child self-report of health-related quality of life (HRQL) in sickle cell disease. We hypothesized that the mental health of the parent, parental HRQL and child characteristics would affect agreement.

PROCEDURE: In a cross-sectional study of children with sickle cell disease, HRQL of the child and the parent's HRQL and mental health were assessed. The effect of parent and child characteristics on agreement between parent-proxy and child self-report of HRQL were determined.

RESULTS: Rates of agreement between parent-proxy and child self-report of HRQL ranged between 42% and 49%. Parents with increased symptoms of distress had an increased odds of reporting a worse physical (Odds Ratio (OR) 1.12) and psychosocial HRQL (OR 1.10) compared to the child's self-report. Severe sickle cell disease was associated with an increased odds of the parent reporting the child's physical HRQL was worse, (OR 4.68) compared to the child's self-report.

CONCLUSIONS: Greater symptoms of distress in the parent are associated with worse parent-proxy report of the child's HRQL. Severe sickle cell disease is associated with greater disagreement between parent-proxy and child self-report of HRQL. These findings broaden our understanding of factors that influence proxy-reporting of a child's HRQL.

Author List

Panepinto JA, Hoffmann RG, Pajewski NM

Author

Julie A. Panepinto MD, MSPH Professor in the Pediatrics department at Medical College of Wisconsin




Scopus

2-s2.0-77957095281   18 Citations

MESH terms used to index this publication - Major topics in bold

Adolescent
Adult
Anemia, Sickle Cell
Child
Child, Preschool
Cross-Sectional Studies
Female
Health Status
Humans
Male
Mental Health
Parents
Proxy
Quality of Life
jenkins-FCD Prod-310 bff9d975ec7f2d302586822146c2801dd4449aad