Self-evaluation of personal needs by community-living young stroke survivors using an online English language questionnaire

Abstract

Background Identifying personal needs of young stroke survivors is crucial for their recovery. Purpose Identify factors, burden, and significance of unmet needs of young community-living stroke survivors. Materials and methods We used online advertising and word-of-mouth snowballing to recruit participants for an English language online questionnaire constructed for this purpose. Eligible participants aged 18–55 at time of stroke. Needs were classified into seven domains: Healthcare Experience, Impairments from Stroke, Everyday Activities, Work/Study, Finances, Relationships, and Social Participation. Random-effects logistic regression was used to determine the probability of unmet needs and X2 test to determine significance of distribution across domains. Results Out of 137 responses recorded: 32 did not meet inclusion criteria, 29 duplicates identified were discarded, and 76 eligible participants were analysed. Respondents were median 37 (IQR 32–47) years at time of stroke, and median 3 (1–5) years since stroke. Fifty-eight (76%) females. Modified Rankin Scale median score of 1 (1–3). Of 48 identified potential needs, 25 (IQR 19–30) were rated unmet. Twenty (IQR 15–25) considered of high significance. Unmet needs most frequently occurred in the domains: Impairments from Stroke, Finances, and Social Participation. Conclusions There is high burden of unmet needs in community-living young stroke survivors which are spread disproportionately across the identified domains. IMPLICATIONS FOR REHABILITATION Identifying personal needs of young stroke survivors is crucial for their recovery. Impairments after Stroke, Finances, and Social Participation were often selected as being high burden unmet needs for community-living young people after stroke. Employing a post-stroke checklist to guide exploration of needs in young stroke may better capture which needs are unmet.