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.

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 between patients with different levels of impairment and can be recommended for treatment evaluation and group comparison in clinical studies of children and adolescents with CP.