Health state descriptions to elicit stroke values: do they reflect patient experience of stroke?

BMC Health Services Research

Richard G Thomson⁴  Peter McMeekin⁴  Gary A Ford¹  Madeleine J Murtagh²  Mabel L S Lie³  Joanne Gray⁵ 

[1] Institute for Ageing and Health (Stroke Research Group), Newcastle University, Newcastle Upon Tyne, UK;School of Social & Community Medicine, Bristol University, Bristol, UK;Institute of Cellular Medicine, Newcastle University, Newcastle Upon Tyne, UK;Institute of Health and Society, Newcastle University, Newcastle Upon Tyne, UK;School of Health, Community and Education Studies, Northumbria University, Coach Lane, Benton, Newcastle upon Tyne NE7 7XA, UK

关键词: Patient experience;    Preference elicitation;    Quality of life;    Outcome research;    Cerebrovascular disease/stroke;   

Others  :  1091198
DOI  :  10.1186/s12913-014-0573-6

 received in 2014-04-03, accepted in 2014-11-03,  发布年份 2014

【 摘 要 】

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.

【 授权许可】

   
2014 Gray et al.; licensee BioMed Central Ltd.

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