The effect of parental mental health on proxy reports of health-related quality of life in children with sickle cell disease.
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.


METHODS
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.
Panepinto
Julie A
JA
Department of Pediatrics, Children's Research Institute of the Children's Hospital of Wisconsin/Medical College of Wisconsin, Milwaukee, Wisconsin, USA. jpanepin@mcw.edu
Hoffmann
Raymond G
RG
Pajewski
Nicholas M
NM
D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008603:Mental Health; D010290:Parents / Q000523:psychology*; D019727:Proxy; D011788:Quality of Life