No / Improving cognition is service users' top research priority for life after stroke, and future research should include outcomes that they deem important. Patient perspectives on outcomes are collected using patient-reported outcome measures (PROMs). There is currently no patient-centred PROM specific for cognitive rehabilitation trials.
Objective
Inform PROM development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post-stroke cognitive problems.
Design
Qualitative semi-structured interviews in participants' homes.
Participants
Purposive sample of 16 cognitively impaired stroke survivors at least six months post-stroke.
Methods
Interviews used a schedule and communication aids developed through patient consultation. Interviews were transcribed verbatim with non-verbal communication recorded using field notes. Data were analysed using a framework approach to find commonalities to shape the focus and content of an outcome measure.
Results
Participants identified important impacts of their ‘invisible’ cognitive problems, outside of other stroke-related impairments. Cognitive problems exacerbated emotional issues and vice versa. Changes in self-identity and social participation were prominent. Impact was not spoken about in terms of frequency but rather in terms of the negative affect associated with problems; terms like ‘bothered’ and ‘frustration’ were often used.
Conclusions
The results support the development of a PROM specifically designed to address the impact of cognitive problems. It should:
include items addressing a comprehensive range of cognitive skills;
ask questions about mood, self-identity and social participation;
use accessible wording that respondents understand and endorse;
measure impact rather than frequency; and
explore perceived impact on carers.
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/7372 |
| Date | 12 1900 |
| Creators | Patchick, E., Horne, Maria, Vail, A., Bowen, A. |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Article, No full-text in the repository |
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