A preliminary study of the development, validity, and reliability of a caregiver questionnaire for the health-related quality of life in children with cerebral palsy

Background: In Taiwan, there is no disease-specific instrument to measure the health-related quality of life (HRQL) in children with cerebral palsy (CP). The goal of this preliminary study was to develop and test the validity and reliability of a caregiver questionnaire for HRQL in children with CP (CQ-HRQL-CP). Methods: The CQ-HRQL-CP included 4 dimensions, motor ability, pain and emotion, interaction and participation, and satisfaction and expectation. The questions were modified based on the content validity index (CVI). A purposive sampling of 45 parents of children with CP completed tests of the item discriminant validity and internal consistency. Twenty of these parents were randomly recruited for further testing of the test-retest reliability. Results: The CVI of individual items and dimensions was 0.86~1. With regard to the item discriminant validity, items which correlated more strongly with other dimensions than with their own dimensions were deleted. The adjusted Cronbach's coefficient value was 0.87~0.99. The test-retest reliability, evaluated using an intraclass correlation coefficient (ICC_(3,1)), was 0.86~0.99 for each dimension. Conclusions: The content validity, item discriminant validity, internal consistency, and test-retest reliability of this new CQ-HRQL-CP were acceptable. Further study of the concurrent validity of the CQ-HRQL-CP is needed.