Cerebral Cavernous Malformations Patient Perception Analysis via Social Media.


Journal

Journal of neurological surgery. Part A, Central European neurosurgery
ISSN: 2193-6323
Titre abrégé: J Neurol Surg A Cent Eur Neurosurg
Pays: Germany
ID NLM: 101580767

Informations de publication

Date de publication:
23 May 2023
Historique:
pubmed: 10 12 2022
medline: 10 12 2022
entrez: 9 12 2022
Statut: aheadofprint

Résumé

 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.  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.  Overall, more patients are using Instagram (  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.

Sections du résumé

BACKGROUND 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 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 RESULTS
 Overall, more patients are using Instagram (
CONCLUSION CONCLUSIONS
 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.

Identifiants

pubmed: 36481997
doi: 10.1055/a-1994-9435
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Informations de copyright

Thieme. All rights reserved.

Déclaration de conflit d'intérêts

None declared.

Auteurs

Avi A Gajjar (AA)

Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States.

Aditya Jain (A)

Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States.

Anthony Huy-Dinh Le (AH)

Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States.

Mohamed M Salem (MM)

Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States.

Brian T Jankowitz (BT)

Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States.

Jan-Karl Burkhardt (JK)

Department of Neurosurgery, Hospital of the University of Pennsylvania, Penn Medicine, Philadelphia, Pennsylvania, United States.

Classifications MeSH