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Development and testing of a health related quality of life instrument for non-ambulatory adults with severe disabilities


- candidate number28461
- NTR NumberNTR6962
- ISRCTNISRCTN no longer applicable
- Date ISRCTN created
- date ISRCTN requested
- Date Registered NTR24-jan-2018
- Secondary IDs201700844 UMCG Research Register
- Public TitleDevelopment and testing of a health related quality of life instrument for non-ambulatory adults with severe disabilities
- Scientific TitleDevelopment and testing of a health related quality of life instrument for non-ambulatory adults with severe disabilities
- ACRONYMCPCHILD-18+
- hypothesisThe CPCHILD-18+ is sufficiently tested for its psycometric characteristics to be used in clinical practice and research
- Healt Condition(s) or Problem(s) studiedCerebral palsy, Severe disabilities, Non-ambulatory adults
- Inclusion criteriaAdult 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 criteriaExclusion 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
- mec approval receivedno
- multicenter trialno
- randomisedno
- group[default]
- Type[default]
- Studytypeobservational
- planned startdate 1-feb-2018
- planned closingdate31-dec-2019
- Target number of participants50
- Interventionsnot applicable
- Primary outcomeScores of the health-related quality of life instrument that is tested for its psychometric evaluation
- Secondary outcomenot applicable
- Timepointsnot applicable
- Trial web site
- statusplanned
- CONTACT FOR PUBLIC QUERIESMSc T. Zalmstra
- CONTACT for SCIENTIFIC QUERIESMSc T. Zalmstra
- Sponsor/Initiator RijksUniversiteit Groningen
- Funding
(Source(s) of Monetary or Material Support)
- Publications
- Brief summaryRationale: 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.
- Main changes (audit trail)Studie niet WMO-plichtig.
- RECORD24-jan-2018 - 23-feb-2018


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