Assessing the reliability and validity of a health-related quality of life instrument, CPADULT, in a Dutch sample of adults with severe disabilities who are non-ambulatory.

Background: A measure to provide insight regarding health-related quality of life of adults with severe motor and intellectual disabilities was lacking. For this reason, the CPADULT was developed. This measure includes domains relating to an individual's physical, mental, and social functioning.

Development and sensibility assessment of a health-related quality of life instrument for adults with severe disabilities who are non-ambulatory.

Background: Insight in health-related quality of life (HRQoL) of adults with severe disabilities who are non-ambulatory is important, but a measure is lacking. The aim was to develop a HRQoL measure for this group.

Method: The developmental process consisted of the adaptation process of a proxy HRQoL measure for children with severe disabilities who are non-ambulatory and the assessment of the sensibility of the developed instrument.

Longitudinal validation of the Caregiver Priorities and Child Health Index of Life with Disabilities in a Dutch sample of nonambulatory children with severe disabilities.

Background: The purpose of this study was to evaluate the longitudinal validity of the Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), a health-related quality of life instrument for nonambulatory children with severe motor disabilities and accompanying disorders.

Methods: The effect of two interventions, Botox injections in the hip region and percutaneous endoscopic gastrostomy, was followed over time. Caregivers (n = 38) of nonambulatory children (26 boys, 12 girls; mean age: 9 years, 5 months [4 years, 9 months]) with severe disabilities completed the questionnaire prior to the intervention, at 3 months and 6 months follow up.

Pain and hospital admissions are important factors associated with quality of life in nonambulatory children.

Aim: This was the first study to investigate the factors associated with health-related quality of life (HRQoL) in nonambulatory children with cerebral palsy (CP), based on a HRQoL measure specifically developed for this population.

Methods: The Dutch version of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD-DV) was used to measure HRQoL. It was completed by 66 parents of 47 boys and 19 girls with nonambulatory CP aged between five and 18 years with gross motor function classification system (GMFCS) levels of IV and V.

Validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) in a sample of Dutch non-ambulatory children with cerebral palsy.

Purpose: To assess the reliability and validity of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD)-Dutch Version, a proxy measure of health status and well-being of non-ambulatory children with cerebral palsy (CP).

Methods: Parents (n = 66) of 47 boys/19 girls between 5 and 18 years with CP (GMFCS IV-V) participated. To assess the reliability each domain and the total measure was tested for internal consistency, test-retest and inter-rater reliability.