Background The rise of social media has allowed for individuals and patients to connect with each other and influence patient behavior. This study aimed to improve our understanding of the patients' experience with cerebral cavernous malformations (CCM) via social media.

Methods Instagram and Twitter were searched using terms of (“cavernoma,” “cavernous malformations,” “cavernous angioma,” or “cav mal”). Public Instagram posts tagged with “#cavernoma” and “@cavernoma” identified 327 posts that directly included a patient's own experience. Twitter posts that included “#cavernoma” and “@cavernoma” were searched, yielding 75 after eliminating those that did not pertain to the patient's own experience. The posts and tweets were coded for relevant themes related to their experience with the disease.

Results Overall, more patients are using Instagram (n  =  327) over Twitter (n  =  84) to share their personal experience with CCM with a trend for male patients to use Twitter more compared to females with a female predominance in Instagram. A total of 277 of 327 (84.7%) Instagram posts and 67 of 84 (89.3%) Twitter posts were made after the patient's surgery. The most common theme on Instagram was focused on the postoperative rehabilitation process and mobility support (52.0 and 24.5%, respectively). Other common themes present on Twitter and Instagram were recounting symptoms and complications and life satisfaction (26.0 and 24.2%, respectively). Cavernoma patients prior to surgery were more likely to discuss on Instagram their symptoms (p  =  0.001), fear of bleeding (p  <  0.001), and mental health (p  =  0.014). Postoperatively, cavernoma patients were more likely to discuss disability than they were preoperatively (p  =  0.001).

Conclusion Social media platforms offer a communication tool for patients with CCM patients to share their experience with other patients and the general public and portrays their personal experience with CCM. These platforms allow for physicians to better understand the patient experience following cavernoma surgery.

The authors have no personal, financial, or institutional interest in any of the drugs, materials, or devices described in this manuscript. Patient consent for publication was obtained.

AG, AJ, AHDL, JKB were involved in the design and conception of this manuscript. AHDL and MS performed the literature search. AG and AJ compiled the primary manuscript. AG compiled the figures. BTJ and JKB critically revised the manuscript. All the authors approved the manuscript as it is written.

All data pertaining to this research article are included within the manuscript as written.

Received: 03 May 2022

Accepted: 08 December 2022

Accepted Manuscript online:
08 December 2022

Article published online:
23 May 2023

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