Proxy reporting of health-related quality of life for people with dementia: a psychometric solution.

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

SUBMITTER: Smith SC 

PROVIDER: S-EPMC7245851 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature