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

Trees A. L. Zalmstra; Agnes Elema; Willemijn van Gils; Heleen A. Reinders-Messelink; Corry K. van der Sluis; Annette A. J. van der Putten

doi:10.1111/jar.12873

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

Trees A. L. Zalmstra^*, Agnes Elema, Willemijn van Gils, Heleen A. Reinders-Messelink, Corry K. van der Sluis, Annette A. J. van der Putten

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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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.

Original language	English
Number of pages	9
Journal	Journal of Applied Research in Intellectual Disabilities
DOIs	https://doi.org/10.1111/jar.12873
Publication status	E-pub ahead of print - 5-Mar-2021

Keywords

cerebral palsy
health&#8208
related quality of life
severe disabilities

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10.1111/jar.12873Licence: CC BY-NC-ND

Development and sensibility assessment of a health‐related quality of life instrument for adults with severe disabilities who are non‐ambulatoryFinal publisher's version, 561 KBLicence: CC BY-NC-ND

Cite this

@article{7e3c286552c74ed1857e65bfc0ef8d5f,

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

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.",

keywords = "cerebral palsy, health&#8208, related quality of life, severe disabilities",

author = "Zalmstra, {Trees A. L.} and Agnes Elema and {van Gils}, Willemijn and Reinders-Messelink, {Heleen A.} and {van der Sluis}, {Corry K.} and {van der Putten}, {Annette A. J.}",

note = "{\textcopyright} 2021 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.",

year = "2021",

month = mar,

day = "5",

doi = "10.1111/jar.12873",

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journal = "Journal of Applied Research in Intellectual Disabilities",

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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. / Zalmstra, Trees A. L.; Elema, Agnes; van Gils, Willemijn; Reinders-Messelink, Heleen A.; van der Sluis, Corry K.; van der Putten, Annette A. J.

In: Journal of Applied Research in Intellectual Disabilities, 05.03.2021.

Research output: Contribution to journal › Article › Academic › peer-review

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T1 - Development and sensibility assessment of a health-related quality of life instrument for adults with severe disabilities who are non-ambulatory

AU - Zalmstra, Trees A. L.

AU - Elema, Agnes

AU - van Gils, Willemijn

AU - Reinders-Messelink, Heleen A.

AU - van der Sluis, Corry K.

AU - van der Putten, Annette A. J.

PY - 2021/3/5

Y1 - 2021/3/5

N2 - 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.

AB - 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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