TY  - JOUR
AU  - Sloesen, Brigitte
AU  - O'Brien, Paul
AU  - Verma, Himanshu
AU  - Asaithambi, Sathyaraj
AU  - Parashar, Nikita
AU  - Mothe, Raj Kumar
AU  - Shaikh, Javed
AU  - Syntosi, Annie
PY  - 2024
DA  - 2024/2/15
TI  - Patient Experiences and Insights on Chronic Ocular Pain: Social Media Listening Study
JO  - JMIR Form Res
SP  - e47245
VL  - 8
KW  - chronic ocular surface pain, patients' experiences
KW  - quality of life
KW  - social media
KW  - Twitter
KW  - unmet needs
KW  - ocular pain
KW  - ophthalmology
KW  - ocular
KW  - listening
KW  - experience
KW  - experiences
KW  - tweet
KW  - eye pain
KW  - eye condition
KW  - social media platforms
KW  - social media use
KW  - patient experience
KW  - chronic pain
KW  - pain
KW  - internet
KW  - eye
KW  - retina
KW  - online health
KW  - digital health
KW  - web
KW  - vision
KW  - optical
AB  - Background: Ocular pain has multifactorial etiologies that affect activities of daily life, psychological well-being, and health-related quality of life (QoL). Chronic ocular surface pain (COSP) is a persistent eye pain symptom lasting for a period longer than 3 months. Objective: The objective of this social media listening study was to better understand COSP and related symptoms and identify its perceived causes, comorbidities, and impact on QoL from social media posts. Methods: A search from February 2020 to February 2021 was performed on social media platforms (Twitter, Facebook, blogs, and forums) for English-language content posted on the web. Social media platforms that did not provide public access to information or posts were excluded. Social media posts from Australia, Canada, the United Kingdom, and the United States were retrieved using the Social Studio platform—a web-based aggregator tool. Results: Of the 25,590 posts identified initially, 464 posts about COSP were considered relevant; the majority of conversations (98.3%, n=456) were posted by adults (aged >18 years). Work status was mentioned in 52 conversations. Patients’ or caregivers’ discussions across social media platforms were centered around the symptoms (61.9%, n=287) and causes (58%, n=269) of ocular pain. Patients mentioned having symptoms associated with COSP, including headache or head pressure, dry or gritty eyes, light sensitivity, etc. Patients posted that their COSP impacts day-to-day activities such as reading, driving, sleeping, and their social, mental, and functional well-being. Conclusions: Insights from this study reported patients’ experiences, concerns, and the adverse impact on overall QoL. COSP imposes a significant burden on patients, which spans multiple aspects of daily life. 
SN  - 2561-326X
UR  - https://formative.jmir.org/2024/1/e47245
UR  - https://doi.org/10.2196/47245
UR  - http://www.ncbi.nlm.nih.gov/pubmed/38358786
DO  - 10.2196/47245
ID  - info:doi/10.2196/47245
ER  -