Abstract
Background: Long term stroke outcomes in MA are understudied, and the role of informal caregiving and caregiver strain in this population is unknown. We report a pilot study of long-term outcomes in BASIC. Methods: Patients previously interviewed at 90 days post-stroke were invited to participate in a telephone survey related to their 6 or 12 month post-stroke activities of daily living (ADLs) during March-May 2013. ADL score (average of 7 items, range 1-4) was analyzed by self-reported ethnicity using repeated measures models. In a separate sample interviewed at 90 days, patients were asked about willingness to participate in longer term follow-up and a subset of caregivers responded to the caregiver strain index (CSI, range 1-13, higher is worse). Results: Among patients alive at the time of interview, 87% of 39 MA and 74% of 19 NHW participated in the 6 month interview, and 84% of 32 MA and 88% of 8 NHW participated in the 12 month interview. No patients refused at either time point; the remainder could not be contacted. The figure shows trajectories of ADL score by ethnicity, and worsening scores among MA over time. Interest in longer-term follow-up was high (96% of 25 NHWs and 97% of 38 MAs). Caregivers of MA stroke survivors were most often children (41%) followed by spouses (36%), but were spouses (43%) followed by children (29%) for NHWs. Of 29 caregivers interviewed, 54% of MA and 57% of NHW reported being strained (CSI≥7). Caregiver strain was associated with 90-day ADL score: prevalence ratio = 1.34, 95%CI (1.01, 1.76) for 1 unit increase in ADL score. Conclusions: Our data demonstrate the feasibility of recruiting MA stroke survivors for long-term outcome assessments and suggests that MAs have worse functional outcome and greater functional declines than NHWs. The informal caregiver burden is related to functional outcome and is high in both ethnic groups.
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