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Children’s quality of life: separating the person from the disorder
  1. Peter Rosenbaum
  1. Peter Rosenbaum, McMaster University, CanChild Centre for Childhood Disability Research, IAHS Building, Room 408, 1400 Main Street West, Hamilton, Canada ON L8S 1C7; rosenbau{at}mcmaster.ca

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Quality of life (QoL) has become a popular buzz phrase in many areas of community life, not least in the field of health services. A key paper published recently in the Lancet1 on quality of life in children with cerebral palsy (the SPARCLE study) deserves highlighting in a wider context to an audience captured through the pages of this journal. The findings may in future profoundly affect the way health care professionals dealing with disabled children understand concepts of “quality of life” and apply these ideas in practice. As a member of a Canadian childhood disability research group (CanChild Centre for Childhood Disability Research) with interests in the study of QoL complementary to those of my colleague Professor Allan Colver’s SPARCLE group, I welcome the opportunity to offer personal perspectives on this exciting work.

Summarising briefly, the SPARCLE study used a well-developed broadly-based generic measure of QoL (the KIDSCREEN2) to explore the self-reported QoL of 500 children with cerebral palsy (CP) aged 8–12 years from several European countries. The KIDSCREEN has been carefully and systematically created, using children’s voices from many countries to gather and then itemise the elements and dimensions of the instrument to serve as a generic child-completed measure of the psychosocial aspects of QoL. In the SPARCLE study, children with CP able to self-complete the KIDSCREEN reported that their quality of life was similar to that of children without functional limitations. Furthermore, the type and severity of CP impairments were not associated with QoL for six of the 10 KIDSCREEN domains. Where variations in QoL were observed, there were logical correlations between specific aspects of functional status and specific domains of QoL in the KIDSCREEN rather than simply overall correlations with functional status.

I would like to reflect on what I believe these findings mean …

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