ArticleHealth expectations : an international journal of public participation in health care and health policy2015
Development of a patient-centred, patient-reported outcome measure (PROM) for post-stroke cognitive rehabilitation: qualitative interviews with stroke survivors to inform design and content.
Article in Health expectations : an international journal of public participation in health care and health policy, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers, 1 of them a synthesis that pooled it.
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Who cites it
9 citing papers in PubMed, 1 synthesis or guideline pooled it, 17 citations in OpenAlex.
- Measuring the success of interventions for caregivers: a focussed systematic review.Current opinion in supportive and palliative care · 2019Pooled it
- A scoping review of patient and public involvement in empirical stroke research.International journal of stroke : official journal of the International Stroke Society · 2024Article
- Individualized goals expressed by patients undergoing stroke rehabilitation: an observational study.Journal of rehabilitation medicine · 2024Observational
- Unmet Needs for Rehabilitative Management in Common Health-Related Problems Negatively Impact the Quality of Life of Community-Dwelling Stroke Survivors.Frontiers in neurology · 2021Article
- Why Me?: A Qualitative Study on the Experiences of Young Stroke Survivors in the Accra Metropolis of Ghana, West Africa.Journal of patient experience · 2020Article
- An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs).Journal of patient-reported outcomes · 2020Article
- Value and learning from carer involvement in a cluster randomised controlled trial and process evaluation - Organising Support for Carers of Stroke Survivors (OSCARSS).Research involvement and engagement · 2020Article
- Lived experiences of chronic cognitive and mood symptoms among community-dwelling adults following stroke: a mixed-methods analysis.Aging & mental health · 2019Article
- Article
Corrections and comments
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Authors and funding
5 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundImproving 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.
objectiveInform PROM development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post-stroke cognitive problems.
designQualitative semi-structured interviews in participants' homes.
participantsPurposive sample of 16 cognitively impaired stroke survivors at least six months post-stroke.
methodsInterviews 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.
resultsParticipants 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.
conclusionsThe 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.
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