Development and sensibility assessment of a health‐related quality of life instrument for adults with severe disabilities who are non‐ambulatory
| Autor: | Heleen A. Reinders-Messelink, Agnes Elema, Trees A. L. Zalmstra, Annette van der Putten, Willemijn van Gils, Corry K. van der Sluis |
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| Přispěvatelé: | Extremities Pain and Disability (EXPAND), Developmental and behavioural disorders in education and care: assessment and intervention |
| Jazyk: | angličtina |
| Rok vydání: | 2021 |
| Předmět: |
Adult
030506 rehabilitation Psychometrics severe disabilities Education Cerebral palsy related quality of life 03 medical and health sciences Quality of life Intellectual Disability Surveys and Questionnaires Developmental and Educational Psychology medicine Humans 0501 psychology and cognitive sciences Sensibility Proxy (statistics) Child Health related quality of life cerebral palsy health‐related quality of life 05 social sciences Reproducibility of Results Original Articles Focus Groups medicine.disease Focus group Proxy Quality of Life Original Article Non ambulatory 0305 other medical science Psychology health‐ 050104 developmental & child psychology Clinical psychology |
| Zdroj: | Journal of Applied Research in Intellectual Disabilities Journal of Applied Research in Intellectual Disabilities, 34(4), 1127-1135. Wiley |
| ISSN: | 1468-3148 1360-2322 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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