Health-related quality of life in children with sickle cell disease: child and parent perception. Br J Haematol 2005 Aug;130(3):437-44
Date
07/27/2005Pubmed ID
16042695DOI
10.1111/j.1365-2141.2005.05622.xScopus ID
2-s2.0-24944563944 (requires institutional sign-in at Scopus site) 155 CitationsAbstract
Health-related quality of life (HRQL) is an outcome that may be used to measure the impact of sickle cell disease on the child and their family but has not been routinely assessed in this disease. The objective of this study was to describe the HRQL of children with sickle cell disease as reported by the parent and the child, to compare the relationship between the two, and to determine the association of parent, child and disease characteristics on HRQL. Ninety-five parents completed the Child Health Questionnaire (CHQ)-Parent Form28 and 53 children completed the CHQ-Child Form87. Compared with the child report, parents reported worse HRQL in the overall perception of health, physical functioning, behaviour and self esteem domains of HRQL (P < 0.005). Parent and child reports of HRQL correlated strongly in assessment of the impact of bodily pain (r = 0.58) on HRQL and moderately in physical functioning (r = 0.44), behaviour (r = 0.45), general health (r = 0.44), self esteem (r = 0.40) and changes in health (r = 0.33) domains. Disease status, neurobehavioral co-morbidities, and parent education were associated with the HRQL of the child. Both the parent and child perspectives are needed to fully understand the impact of sickle cell disease on the HRQL of the child and effect of this disease on the family.
Author List
Panepinto JA, O'Mahar KM, DeBaun MR, Loberiza FR, Scott JPMESH terms used to index this publication - Major topics in bold
AdolescentAdult
Anemia, Sickle Cell
Child
Child Behavior
Child, Preschool
Educational Status
Female
Health Status Indicators
Humans
Male
Parents
Perception
Quality of Life
Regression Analysis
Self Concept
Self-Assessment
Sickness Impact Profile
Surveys and Questionnaires