Abstract HUP8: Understanding the Lived Experiences of Primary and Recurrent Stroke Survivors in the United States, with a Focus on Women: the ELEVATE Qualitative Study

Background: Existing evidence indicates that primary and recurrent stroke disproportionately affects women and racial and ethnic minorities in the United States. However, few studies have specifically examined the needs and experiences of these populations. To address this gap, the aim of the ELEVATE (Evidence-based Lived Experience of stroke to Voice the burden of disease And humanize the True Effects of mild and moderate stroke) study was to describe women survivors’ experiences of stroke, residual effects, care, and recurrence risk perceptions, and explore how inter-racial/ethnic factors influence their patient journey. Methods: ELEVATE was a US-only cross-sectional, non-interventional, qualitative study. A Steering Committee of stroke survivors, care partners, patient advocacy group leaders, and healthcare providers was formed to ensure patient needs and priorities were reflected in the study design, recruitment, and communications. One-time semi-structured interviews were conducted with adult women stroke survivors (Black, Hispanic, and non-Hispanic White) who had experienced one stroke/transient ischemic attack (TIA) or two or more stroke events. A sample of men who experienced two or more stroke events was included for benchmarking purposes. Quota sampling supported by purposive and snowball sampling techniques were used to recruit participants for each subgroup until target quotas were reached (Figure 1). Participants were recruited until meaningful saturation was reached, ie, no new meanings attributed to concepts/themes captured were reported. Thematic analysis of the data was conducted to understand how race and ethnicity may influence the patient journey of women with one stroke/TIA and recurrent stroke, and the experiences of women and men with recurrent stroke. Descriptive analyses of the data were performed and outcomes reported in aggregate. Structured matrix queries were run to describe how key themes were represented across subgroups. Frequencies of theme mentions by subgroup were used to elucidate data patterns. Conclusion: ELEVATE sought to provide a clearer understanding of the life experiences, unmet needs, and educational needs of women and racial and ethnic minorities after stroke. Outcomes of this study will inform strategies and interventions to address these reported unmet needs, thus helping mitigate the disproportionate impact of stroke in these populations.