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.

Longitudinal use of the Child Health Questionnaire in childhood cerebral palsy

“…In other chronic disease states, the CHQ has demonstrated changes over time in some domains (Perwien et al 2004, Sawyer et al 2004, including improvement of Role -Physical. Poor sensitivity to change and poor face validity of the CHQ in CP have been cited as reasons to avoid or supplement the CHQ in clinical effectiveness research in CP (Bjornson and McLaughlin 2001). Because the CHQ has not been compared with any other measure of change in HRQL in CP, the responsiveness to change of the CHQ is unknown.…”

Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes

“…1,2 The inclusion of more holistic outcomes, such as measures of quality of life (QOL) and health-related quality of life (HRQOL), is gaining increasing interest. QOL is generally conceptualized as a broad assessment of well-being across various domains, 3 and HRQOL is considered to be a subdomain of the more global construct of QOL. 4,5 The paediatric QOL literature includes both generic and condition-specific instruments.…”

“…individuals with a specific illness), and are useful in detecting outcomes arising from changes in this condition or factors associated with it. 3 Many paediatric QOL instruments have now been developed and several reviews have been published. 1,[6][7][8][9][10][11][12][13] These reviews have assembled basic attributes of those available (i.e.…”

Quality of Life in Children with Cerebral Palsy

“…In relevant literature, the latest studies focused on the assessment of HRQOL in children with CP and directed at increasing the level of HRQOL are signiicantly critical [44]. Functional deicits that develop among children with CP due to the accompanying physical, cognitive, sensory, emotional, and social impairments block these children's capacity to perform their assigned-social roles, thereby leading to major collapses in the level of HRQOL [44,45].…”

“…Functional deicits that develop among children with CP due to the accompanying physical, cognitive, sensory, emotional, and social impairments block these children's capacity to perform their assigned-social roles, thereby leading to major collapses in the level of HRQOL [44,45].…”