{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,17]],"date-time":"2026-05-17T23:40:40Z","timestamp":1779061240651,"version":"3.51.4"},"reference-count":12,"publisher":"Georg Thieme Verlag KG","issue":"02","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Neurol Surg A Cent Eur Neurosurg"],"published-print":{"date-parts":[[2024,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>\n               Background\u2003The 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.<\/jats:p><jats:p>\n               Methods\u2003Instagram and Twitter were searched using terms of (\u201ccavernoma,\u201d \u201ccavernous malformations,\u201d \u201ccavernous angioma,\u201d or \u201ccav mal\u201d). Public Instagram posts tagged with \u201c#cavernoma\u201d and \u201c@cavernoma\u201d identified 327 posts that directly included a patient's own experience. Twitter posts that included \u201c#cavernoma\u201d and \u201c@cavernoma\u201d 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.<\/jats:p><jats:p>\n               Results\u2003Overall, more patients are using Instagram (n\u2009\u2009=\u2009\u2009327) over Twitter (n\u2009\u2009=\u2009\u200984) 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\u2009\u2009=\u2009\u20090.001), fear of bleeding (p\u2009\u2009&lt;\u2009\u20090.001), and mental health (p\u2009\u2009=\u2009\u20090.014). Postoperatively, cavernoma patients were more likely to discuss disability than they were preoperatively (p\u2009\u2009=\u2009\u20090.001).<\/jats:p><jats:p>\n               Conclusion\u2003Social 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.<\/jats:p>","DOI":"10.1055\/a-1994-9435","type":"journal-article","created":{"date-parts":[[2022,12,9]],"date-time":"2022-12-09T00:24:39Z","timestamp":1670545479000},"page":"126-131","source":"Crossref","is-referenced-by-count":10,"title":["Cerebral Cavernous Malformations Patient Perception Analysis via Social Media"],"prefix":"10.1055","volume":"85","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3686-9413","authenticated-orcid":false,"given":"Avi A.","family":"Gajjar","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aditya","family":"Jain","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Anthony Huy-Dinh","family":"Le","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mohamed M.","family":"Salem","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Brian T.","family":"Jankowitz","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jan-Karl","family":"Burkhardt","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"194","published-online":{"date-parts":[[2023,5,23]]},"reference":[{"issue":"04","key":"ref1","doi-asserted-by":"crossref","first-page":"e85","DOI":"10.2196\/jmir.1933","article-title":"A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication","volume":"15","author":"S A Moorhead","year":"2013","journal-title":"J Med Internet Res"},{"issue":"01","key":"ref2","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1177\/1524839911405850","article-title":"Harnessing social media for health promotion and behavior change","volume":"14","author":"H 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Gamma Knife stereotactic radiosurgery through Twitter and Instagram","volume":"13","author":"R Jacobs","year":"2018","journal-title":"Interdiscip Neurosurg"},{"issue":"06","key":"ref10","doi-asserted-by":"crossref","first-page":"598","DOI":"10.1007\/s11899-017-0421-y","article-title":"Rare cancers and social media: analysis of twitter metrics in the first 2 years of a rare-disease community for myeloproliferative neoplasms on social media-#MPNSM","volume":"12","author":"N Pemmaraju","year":"2017","journal-title":"Curr Hematol Malig Rep"},{"issue":"02","key":"ref11","doi-asserted-by":"crossref","first-page":"140","DOI":"10.1111\/j.1365-2044.2007.04934.x","article-title":"The effect of skin surface warming on pre-operative anxiety in neurosurgery patients","volume":"62","author":"O Kimberger","year":"2007","journal-title":"Anaesthesia"},{"issue":"03","key":"ref14","doi-asserted-by":"crossref","first-page":"288","DOI":"10.1016\/j.pec.2011.06.014","article-title":"Outcomes of online support and resources for cancer survivors: a systematic literature review","volume":"86","author":"Y Hong","year":"2012","journal-title":"Patient Educ Couns"}],"container-title":["Journal of Neurological Surgery Part A: Central European 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