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Proxy reporting of health-related quality of life for people with dementia: a psychometric solution.
Smith, S C; Hendriks, A A J; Cano, S J; Black, N.
Afiliação
  • Smith SC; Department of Health Services Research & Policy, London School of Hygiene & Tropical Medicine, WC1H 9SH, London, UK. sarah.smith@lshtm.ac.uk.
  • Hendriks AAJ; Department of Health Services Research & Policy, London School of Hygiene & Tropical Medicine, WC1H 9SH, London, UK.
  • Cano SJ; Modus Outcomes, Spirella Building, Letchworth Garden City, SG6 4ET, UK.
  • Black N; Department of Health Services Research & Policy, London School of Hygiene & Tropical Medicine, WC1H 9SH, London, UK.
Health Qual Life Outcomes ; 18(1): 148, 2020 May 24.
Article em En | MEDLINE | ID: mdl-32448322
ABSTRACT

BACKGROUND:

The growing move towards personalised health and social care systems means that every effort needs to be made to generate patient-reported outcome data. However, the deteriorating nature of dementia can make it difficult for people with dementia to complete self-reported questionnaires and it is often necessary to rely on a family member (proxy) to report on their behalf. There is little evidence to guide how the difference between self- and proxy-reports of health reported quality of life (HRQL) in dementia can be interpreted.

METHODS:

We recruited people with dementia and their family carers from 78 memory Assessment Services in the UK. We used Rasch measurement methods to investigate whether a HRQL questionnaire known as DEMQOL (self-reported by the person with dementia) and DEMQOL-Proxy (proxy-reported by a family carer) can be placed on the same continuum and whether a revised scoring algorithm, based on this equated model, can be developed that takes account of the relationship between self- and proxy-reports.

RESULTS:

In a sample of 1434 patients and 1030 carers, our findings supported equating DEMQOL/DEMQOL-Proxy (overall fit to the model; no mis-fitting items) after addressing specific issues (eight disordered items requiring re-scoring, four pairs locally dependent items, and five items showing DIF). Cross walk tables have been produced.

CONCLUSIONS:

We have established for the first time that DEMQOL and DEMQOL-Proxy can be placed on the same continuum and that patients and carer proxies are reporting on the same construct when they complete these questionnaires. Where possible both DEMQOL and DEMQOL-Proxy should still be administered together, using the improved scoring algorithm reported here. Where only DEMQOL-Proxy is available, the cross walk tables provide an estimate of DEMQOL for a particular person from their DEMQOL-Proxy score.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Inquéritos e Questionários / Demência Tipo de estudo: Etiology_studies / Incidence_studies / Observational_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Limite: Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Health Qual Life Outcomes Assunto da revista: SAUDE PUBLICA Ano de publicação: 2020 Tipo de documento: Article País de afiliação: Reino Unido

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Qualidade de Vida / Inquéritos e Questionários / Demência Tipo de estudo: Etiology_studies / Incidence_studies / Observational_studies / Prognostic_studies / Qualitative_research / Risk_factors_studies Limite: Aged / Aged80 / Female / Humans / Male / Middle aged Idioma: En Revista: Health Qual Life Outcomes Assunto da revista: SAUDE PUBLICA Ano de publicação: 2020 Tipo de documento: Article País de afiliação: Reino Unido