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...

Full description

Saved in:
Bibliographic Details
Published in:Journal of applied research in intellectual disabilities 2021-07, Vol.34 (4), p.1127-1135
Main Authors: Zalmstra, Trees A. L., Elema, Agnes, Gils, Willemijn, Reinders‐Messelink, Heleen A., Sluis, Corry K., Putten, Annette A. J.
Format: Article
Language:English
Subjects:
Adults
Cerebral palsy
Health
health‐related quality of life
Original
People with disabilities
Physical Disabilities
Quality of Life
Quantitative psychology
Questionnaires
Severe Disabilities
Test Construction
Test Items
Test Validity
Citations: Items that this one cites
Items that cite this one
Online Access:Get full text
Tags: Add Tag
No Tags, Be the first to tag this record!
Description
Summary: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.
ISSN:1360-2322
1468-3148
DOI:10.1111/jar.12873