No registrations found.
ID
Source
Brief title
Health condition
health related quality of life of non-ambulatory adults with severe disabilities e.g. cerebral palsy
Sponsors and support
Intervention
Outcome measures
Primary outcome
Scores of the health-related quality of life instrument that is tested for its psychometric evaluation
Secondary outcome
not applicable
Background summary
Rationale: Because of a higher life expectancy of non-ambulatory children with severe disabilities there is a growing need for an adult-specific Health related quality of life-measure
Objective:
Objective 1. Assess the face and content validity of the CPCHILD-18+: Evaluate the suitability of the items of the CPCHILD-DV for use with non-ambulatory adults in a Dutch population, to establish the elimination, modification, or retention of each item and addition of new items (content adaptations) for the CPCHILD-18+; Assess the sensibility of the CPCHILD-18+, namely its comprehensibility, clarity of instruction, suitability of the response scale, and ease of usage in a Dutch population.
Objective 2. Assess the test-retest reliability, internal consistency and known groups-validity of the CPCHILD-18+ in a Dutch population.
Study design: a cross-sectional study
Study population: Direct support persons and/or parents of non-ambulatory adults with severe disabilities.
Study objective
The CPCHILD-18+ is sufficiently tested for its psycometric characteristics to be used in clinical practice and research
Study design
not applicable
Intervention
not applicable
Inclusion criteria
Adult primary caregiver (parent or direct support person) of a person:
• with severe disabilities e.g. cerebral palsy, syndromes, profound intellectual and multiple disabilities (
• age from 18 years up
• non-ambulatory (GMFCS level IV or V )
for at least the last six months. The caregiver has to have sufficient understanding of the written Dutch language.
Exclusion criteria
Exclusion criteria includes the presence of a progressive neurological disorder or severe concurrent illness or disease in the non-ambulatory adult, not typically associated with the underlying disability
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| NTR-new | NL6576 |
| NTR-old | NTR6962 |
| Other | UMCG Research Register : 201700844 |