Made to measure: development and validation of the CPCHILD-DV and the CPADULT, health-related quality of life measures for people with severe disabilities who are non-ambulatory

This thesis describes the development and validation of two instruments that measure health-related quality of life of people with severe motor and intellectual disabilities who are non-ambulatory Health-related quality of life is considered a good indicator to identify needs of a person and to determine whether the support or treatment provided is meaningful. For people with severe motor and intellectual disabilities who are non-ambulatory, it is nearly impossible to complete a questionnaire themselves. Therefore, the assessment is done by parents, relatives or professionals. For children, the CPCHILD-DV has been developed. The CPCHILD, developed in Canada, has been translated and adapted for the Dutch situation. The questionnaire consists of six domains: 1 personal care/daily activities; 2 sitting, standing & moving; 3 well-being & emotions; 4 communication & social interaction; 5 health; 6 overall quality of life. The CPADULT was developed using the CPCHILD-DV as a starting point and adapted for an adult target group. The two measurement instruments were developed in close collaboration with practitioners. These new instruments were then assessed for their quality. The studies showed that the CPCHILD-DV and the CPADULT have sufficient reliability and validity to be used as outcome measures. The CPCHILD-DV and CPADULT are available at no cost after registration on the website: www.cpchild.nl