{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,11]],"date-time":"2026-04-11T09:47:55Z","timestamp":1775900875605,"version":"3.50.1"},"reference-count":34,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2014,12,5]],"date-time":"2014-12-05T00:00:00Z","timestamp":1417737600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/501100000364","name":"Stroke Association","doi-asserted-by":"crossref","award":["TSA_JRTF_2010\/01"],"award-info":[{"award-number":["TSA_JRTF_2010\/01"]}],"id":[{"id":"10.13039\/501100000364","id-type":"DOI","asserted-by":"crossref"}]},{"DOI":"10.13039\/501100012358","name":"National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Greater Manchester","doi-asserted-by":"crossref","id":[{"id":"10.13039\/501100012358","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2015,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>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\u2010reported outcome measures (<jats:styled-content style=\"fixed-case\">PROM<\/jats:styled-content>s). There is currently no patient\u2010centred <jats:styled-content style=\"fixed-case\">PROM<\/jats:styled-content> specific for cognitive rehabilitation trials.<\/jats:p><\/jats:sec><jats:sec><jats:title>Objective<\/jats:title><jats:p>Inform <jats:styled-content style=\"fixed-case\">PROM<\/jats:styled-content> development by exploring stroke survivor perspectives on the important, measurable impacts of persisting post\u2010stroke cognitive problems.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Qualitative semi\u2010structured interviews in participants' homes.<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>Purposive sample of 16 cognitively impaired stroke survivors at least six months post\u2010stroke.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Interviews used a schedule and communication aids developed through patient consultation. Interviews were transcribed verbatim with non\u2010verbal 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Participants identified important impacts of their \u2018invisible\u2019 cognitive problems, outside of other stroke\u2010related impairments. Cognitive problems exacerbated emotional issues and vice versa. Changes in self\u2010identity 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 \u2018bothered\u2019 and \u2018frustration\u2019 were often used.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The results support the development of a <jats:styled-content style=\"fixed-case\">PROM<\/jats:styled-content> specifically designed to address the impact of cognitive problems. It should:<\/jats:p><jats:p>\n<jats:list list-type=\"bullet\">\n\n<jats:list-item><jats:p>include items addressing a comprehensive range of cognitive skills;<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>ask questions about mood, self\u2010identity and social participation;<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>use accessible wording that respondents understand and endorse;<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>measure impact rather than frequency; and<\/jats:p><\/jats:list-item>\n\n<jats:list-item><jats:p>explore perceived impact on carers.<\/jats:p><\/jats:list-item>\n<\/jats:list>\n<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.12311","type":"journal-article","created":{"date-parts":[[2014,12,9]],"date-time":"2014-12-09T01:49:04Z","timestamp":1418089744000},"page":"3213-3224","source":"Crossref","is-referenced-by-count":14,"title":["Development of a patient\u2010centred, patient\u2010reported outcome measure (PROM) for post\u2010stroke 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