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Development and Sensibility Assessment of a Health-Related Quality of Life Instrument for Adults with Severe Disabilities Who Are Non-Ambulatory

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Title: Development and Sensibility Assessment of a Health-Related Quality of Life Instrument for Adults with Severe Disabilities Who Are Non-Ambulatory
Language: English
Authors: Zalmstra, Trees A. L. (ORCID 0000-0001-8431-2332), Elema, Agnes, van Gils, Willemijn, Reinders-Messelink, Heleen A., van der Sluis, Corry K., van der Putten, Annette A. J.
Source: Journal of Applied Research in Intellectual Disabilities. Jul 2021 34(4):1127-1135.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 9
Publication Date: 2021
Document Type: Journal Articles
Reports - Research
Descriptors: Quality of Life, Adults, Severe Disabilities, Physical Disabilities, Test Construction, Test Items, Test Validity
DOI: 10.1111/jar.12873
ISSN: 1360-2322
Abstract: 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. A three-step process was used: focus groups, e-survey and interviews. Results: In total, 72% of the items remained unchanged. Three new items and one element to an existing item were added. In ten items, the formulation of the items was adapted to the target group. Concerning the sensibility, respondents suggested minor changes to the instruction and the output scales. Conclusions: This study has yielded a proxy HRQoL measure for adults with severe disabilities who are non-ambulatory, the CPADULT, with good sensibility.
Abstractor: As Provided
Entry Date: 2021
Accession Number: EJ1299779
Database: ERIC
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  Data: Development and Sensibility Assessment of a Health-Related Quality of Life Instrument for Adults with Severe Disabilities Who Are Non-Ambulatory
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  Data: <searchLink fieldCode="AR" term="%22Zalmstra%2C+Trees+A%2E+L%2E%22">Zalmstra, Trees A. L.</searchLink> (ORCID <externalLink term="https://orcid.org/0000-0001-8431-2332">0000-0001-8431-2332</externalLink>)<br /><searchLink fieldCode="AR" term="%22Elema%2C+Agnes%22">Elema, Agnes</searchLink><br /><searchLink fieldCode="AR" term="%22van+Gils%2C+Willemijn%22">van Gils, Willemijn</searchLink><br /><searchLink fieldCode="AR" term="%22Reinders-Messelink%2C+Heleen+A%2E%22">Reinders-Messelink, Heleen A.</searchLink><br /><searchLink fieldCode="AR" term="%22van+der+Sluis%2C+Corry+K%2E%22">van der Sluis, Corry K.</searchLink><br /><searchLink fieldCode="AR" term="%22van+der+Putten%2C+Annette+A%2E+J%2E%22">van der Putten, Annette A. J.</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Jul 2021 34(4):1127-1135.
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  Data: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
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  Data: 9
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  Data: <searchLink fieldCode="DE" term="%22Quality+of+Life%22">Quality of Life</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Severe+Disabilities%22">Severe Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Physical+Disabilities%22">Physical Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Test+Construction%22">Test Construction</searchLink><br /><searchLink fieldCode="DE" term="%22Test+Items%22">Test Items</searchLink><br /><searchLink fieldCode="DE" term="%22Test+Validity%22">Test Validity</searchLink>
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  Data: 10.1111/jar.12873
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  Data: 1360-2322
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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. A three-step process was used: focus groups, e-survey and interviews. Results: In total, 72% of the items remained unchanged. Three new items and one element to an existing item were added. In ten items, the formulation of the items was adapted to the target group. Concerning the sensibility, respondents suggested minor changes to the instruction and the output scales. Conclusions: This study has yielded a proxy HRQoL measure for adults with severe disabilities who are non-ambulatory, the CPADULT, with good sensibility.
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      – SubjectFull: Adults
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      – SubjectFull: Severe Disabilities
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      – SubjectFull: Test Construction
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