Understanding unmet needs after young stroke: A codesign project to develop a screening tool

ABSTRACT

Background & Aims: Young stroke survivors (YSS) report unmet needs related to age and life stage that stroke services often overlook. Researchers, advisers with lived experience, and clinicians collaborated to develop the "Young Stroke Unmet Needs Screening Tool". Method(s) Mixed-method codesign project conducted in three phases 1. Literature review conducted and workshop held with 12 advisers (8 YSS, 4 clinicians) to develop initial tool content. 2. Online survey conducted to examine YSS preferences for methods of meeting needs, and gain feedback on tool's usability and content. 3. A version was then developed for people with communication or cognitive impairment using Principles of Supported Conversation for Adults with Aphasia, and cognitive strategies. Semi-structured interviews and focus groups held to further develop and test both versions. Result(s) 171 online survey responses (68% female, mean age 45 years, IQR 36-51). Respondents' demographic and stroke-related characteristics influenced preferences for methods of meeting needs, including face-to-face contact with professionals, peer support and succinct tip sheets. Interviews and focus groups were held online due to COVID, with 20 YSS (age 24-53yrs, 60% reported cognitive impairments and 80% had mild to moderate-severe language limitation), and 10 family members. Recruitment of people with more severe language limitations required personal invitation rather than advertising via social media or stroke groups. The tools include six domains (Body and Mind, Emotions, Information, Daily Life, Relationships, Social) covering 53 potential needs. Also included is a distress thermometer. Use of the tool was strongly endorsed for both versions. Conclusion(s) These new unmet needs screening tools could be used to identify service needs for young stroke survivors, including those with cognitive and/or communication difficulties. The tools are now being used in a large study to identify care pathway requirements, to inform the development of a bespoke health service for young stroke survivors.