Health-Related Quality of Life in Children and Adolescents with Cerebral Palsy: A Secondary Analysis of the DISABKIDS Questionnaire in the Field-Study Cerebral Palsy Subgroup

Neuropediatrics
Esther Mueller-GodeffroyMonika Bullinger

Abstract

Health-related quality of life (HRQOL) instruments are increasingly being used to evaluate interventions and therapy outcomes in children and adolescents with cerebral palsy (CP). A variety of psychometrically sound and validated generic and disease-specific instruments are available. A third type of instrument, the chronic-generic instrument, pertains to features of HRQOL that are shared by various chronic conditions.The DISABKIDS family of questionnaires consists of a chronic-generic core measure (DCGM-37) and several condition-specific modules, among these, a CP module (CPM). The objective of this article was to describe the performance and, specifically, the validity of the DCGM-37 and CPM in children and adolescents with CP. Psychometric properties of the DCGM-37 and the CPM are presented. The discriminant validity was assessed compared with generic measures of HRQOL regarding different levels of impairment (physical independence; developmental delay). A total of 86 patients with CP (mean age 13 years, range 7-19 years) and 78 main caretakers participated in this study. The DCGM-37 and CPM showed much better discriminative ability as compared with generic questionnaires. The DCGM-37 and CPM were able to differentiate betwe...Continue Reading

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