RESUMO
INTRODUCTION: Social media reflects personalized sentiment toward disease and increasingly impacts perceptions of treatment options. This study aims to assess patients experience with and perception of stroke through an analysis of social media posts. METHODS: A variety of terms ("stroke", "stroke survivor", "stroke rehab", "stroke recovery") were used to search for possible qualified posts on Twitter and Instagram. Twitter posts containing "#stroke" and "@stroke" were identified, yielding 2,506 Twitter posts relating to the patient's own experience. Four hundred sixty-eight public Instagram posts marked under "#stroke" and "@stroke," including direct references to the patient's own experience, were analyzed. First vs. recurrent stroke was identified when possible. The posts were coded for themes relating to patient experience with the disease. RESULTS: The most common Twitter theme was raising stroke awareness (23.4 %), while spreading positivity was the most common Instagram theme (66.7 %). Most Twitter posts (93.9 %) were from patients experiencing their first stroke, with only 6.1 % of the posts being about recurrent strokes. Women created the majority of Instagram (75.7 %) and Twitter (77.3 %) posts. Men were more likely to discuss mobility/functional outcomes (p = 0.001) and survival/death (p = 0.014), while women were more likely to recount symptoms (p = 0.014), depression (p = 0.002), fear (p<0.001), and mental health (p = 0.006). CONCLUSION: Stroke patients most often describe their quality of life and discuss raising awareness via social media. Men and women differ in the most commonly shared aspects of their stroke experience. Gauging social media sentiment may guide physicians toward better counseling and psychosocial management of stroke patients.