The relation between health-related quality of life, treatment adherence and disease severity in a paediatric sickle cell disease sample
Article first published online: 24 MAR 2011
© 2011 Blackwell Publishing Ltd
Child: Care, Health and Development
Volume 38, Issue 2, pages 204–210, March 2012
How to Cite
Fisak, B., Belkin, M. H., von Lehe, A. C. and Bansal, M. M. (2012), The relation between health-related quality of life, treatment adherence and disease severity in a paediatric sickle cell disease sample. Child: Care, Health and Development, 38: 204–210. doi: 10.1111/j.1365-2214.2011.01223.x
- Issue published online: 2 FEB 2012
- Article first published online: 24 MAR 2011
- Accepted for publication 17 December 2010
- health-related quality of life;
- sickle cell disease;
- treatment adherence
Background The purpose of this study was to provide a comprehensive examination of the potential factors associated with health-related quality of life (HRQOL) in a paediatric sickle cell disease sample.
Methods Caregivers of 78 paediatric sickle cell disease patients completed surveys, which included measures of HRQOL, treatment adherence and barriers to treatment adherence. Medical chart reviews were also conducted to assess disease severity.
Results Barriers to treatment adherence and pain crisis frequency were found to be the most robust factors associated with HRQOL.
Conclusions This study provides insight into the factors related to paediatric sickle cell disease and informs both clinicians and researchers interested in understanding and improving HRQOL in this population. In particular, the reduction of pain crises frequency and barriers to adherence may be particularly effective strategies to improve HRQOL.