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Lookup NU author(s): Jo Gray,
Dr Mabel LieORCiD,
Professor Madeleine Murtagh,
Professor Gary Ford,
Dr Peter McMeekin,
Emeritus Professor Richard Thomson
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Background: To explore whether stroke health state descriptions used in preference elicitation studies reflect patients' experiences by comparing published descriptions with qualitative studies exploring patients' lived experience.Methods: Two literature reviews were conducted: on stroke health state descriptions used in direct preference elicitation studies and the qualitative literature on patients' stroke experience. Content and comparative thematic analysis was used to identify characteristics of stroke experience in both types of study which were further mapped onto health related quality of life (HRQOL) domains relevant to stroke. Two authors reviewed the coded text, categories and domains.Results: We included 35 studies: seven direct preference elicitation studies and 28 qualitative studies on patients' experience. Fifteen coded categories were identified in the published health state descriptions and 29 in the qualitative studies. When mapped onto domains related to HRQOL, qualitative studies included a wider range of categories in every domain that were relevant to the patients' experience than health state descriptions.Conclusions: Variation exists in the content of health state descriptions for all levels of stroke severity, most critically with a major disjuncture between the content of descriptions and how stroke is experienced by patients. There is no systematic method for constructing the content/scope of health state descriptions for stroke, and the patient perspective is not incorporated, producing descriptions with major deficits in reflecting the lived experience of stroke, and raising serious questions about the values derived from such descriptions and conclusions based on these values.
Author(s): Gray J, Lie M, Murtagh M, Ford G, McMeekin P, Thomson R
Publication type: Article
Publication status: Published
Journal: BMC Health Services Research
Online publication date: 21/11/2014
Acceptance date: 14/05/2014
Date deposited: 05/03/2015
ISSN (electronic): 1472-6963
Publisher: BioMed Central Ltd.
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