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Journal of stroke and cerebrovascular diseases : the official journal of National Stroke Association · 2025

Moyamoya disease: Understanding patient experiences through thematic analysis of Instagram, TikTok, and Twitter posts.

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Hou Neo Y, Gajjar Avi A, Hou Eli, Barpujari Arnav, Salem Mohamed M, Sioutas Georgios, Srinivasan Visish M, Jankowitz Brian T, Burkhardt Jan-Karl

Аннотация

INTRODUCTION: Physicians aim to provide optimal care, considering patient experiences and satisfaction. Traditional in-clinic surveys assessing surgical experiences face numerous limitations, including response bias, and inadequate inclusion of diverse demographics. Social media is an emerging platform for patients to share their healthcare experiences, providing an alternative method for gathering patient feedback. This study explores the prevalent themes of moyamoya disease experiences shared on social media.

METHODS: Posts containing "#moyamoya" and "#moyamoyawarrior" from Instagram, TikTok, and Twitter were analyzed. Posts unrelated to direct patient experiences were excluded. Relevant posts were categorized by themes and analyzed based on the platform, gender, and identity of the poster (patient or someone else). Chi-squared tests were used to determined significance of theme prevalence.

RESULTS: Of the 1,005 social media posts analyzed, 63.8 % were by patients, and 75.0 % were by females. Most patients (83.0 %) had undergone one surgery. Instagram posts most often focused on Recovery/Rehabilitation (69.7 %), Survival (66.7 %), and Spreading Positivity (45.8 %), while TikTok posts more frequently discussed Survival (97.2 %), Recovery/Rehabilitation (81.3 %), and Spreading Positivity (84.1 %) (p < 0.001). Females were less likely to post on these themes than males, who discussed religious topics more frequently (p = 0.029). Patients discussed appearance (p < 0.001), resiliency (p = 0.002), and quality of life (p = 0.014) more than their loved ones.

CONCLUSION: This study demonstrates social media's use among moyamoya patients, and can supplement traditional methods of obtaining patient feedback. Despite limitations, leveraging social media can enhance understanding patient needs, ultimately improving care quality for Moyamoya disease patients.

Предметные рубрики MeSH

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

Реквизиты и контакты