Development and validation of a tool to measure the impact of childhood disabilities on the lives of children and their families

OBJECTIVE: Information on registers of children with special needs will be more meaningful if a validated measure of the severity of impact of a child's disability on life and family is included. DESIGN: We describe the development and initial validation of a parent-completed questionnaire (Generic Lifestyle Assessment Questionnaire LAQ-G) aimed at measuring such impact. RESULTS: Data were collected on 95 case children, representing various disabilities, and 65 control children without disability, and analysed for case-control, test-re-test and inter-reporter reliability. Multidimensional scaling techniques were then used to derive six domains, representing impact of disability in a structure analogous to the participation domains of the revised International Classification ICF (WHO 2001). CONCLUSIONS: Initial results suggest that the LAQ-G is a reliable measure of the impact of disability for children with a range of common disabling conditions.