The measurement of health-related quality of life (HRQL) in children with cerebral palsy

Abstract

The measurement of health-related quality of life (HRQL) in children with cerebral palsy is part of an emerging discipline. Theoretical models of disability and chronic illness developed by the World Health Organization, the National Center for Medical Rehabilitation Research and others are being adapted for children. Development of HRQL measures in paediatrics lags behind the work completed with adults due to challenges unique to children, such as what domains to measure, whose perspective to address and the developmental changes inherent to children. The descriptive HRQL studies of children with moderate to severe cerebral palsy and comparisons of children with quadriplegia vs. diplegia and hemiplegia are presented. Consistent with the functional measures, no significant difference in HRQL by treatment was documented in children with spastic diplegia participating in a randomized clinical trial of selective dorsal rhizotomy. HRQL measures that are specifically tailored to cerebral palsy need to be developed. Generic and individualized measures of HRQL are currently available and while limited, may be useful for evaluating the effect of different treatments for spasticity on the quality of life in children with cerebral palsy.