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Accepted for/Published in: JMIR Formative Research

Date Submitted: Mar 14, 2023
Date Accepted: Dec 19, 2023

The final, peer-reviewed published version of this preprint can be found here:

Patient Experiences and Insights on Chronic Ocular Pain: Social Media Listening Study

Sloesen B, O’Brien P, Verma H, Aasaithambi S, Parashar N, Mothe RK, Shaikh J, Salzger M, Syntosi A

Patient Experiences and Insights on Chronic Ocular Pain: Social Media Listening Study

JMIR Form Res 2024;8:e47245

DOI: 10.2196/47245

PMID: 38358786

PMCID: 10905354

Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.

Patient Experiences and Insights on Chronic Ocular Pain: A social media listening study

  • Brigitte Sloesen; 
  • Paul O’Brien; 
  • Himanshu Verma; 
  • Sathyaraj Aasaithambi; 
  • Nikita Parashar; 
  • Raj Kumar Mothe; 
  • Javed Shaikh; 
  • Marisel Salzger; 
  • Annie Syntosi

ABSTRACT

Background:

Ocular pain has multifactorial etiologies affecting daily activities, psychological well-being, and health related quality of life. 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, identify the perceived causes and comorbidities, its 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, news, and forums) for English-language content posted online. Social media platforms which did not provide public access to information/posts were excluded. Social media posts from Australia, Canada, United Kingdom (UK), and the United States (USA) were retrieved using the Social Studio® platform (Salesforce.com, USA), an online aggregator tool.

Results:

Of the 25,590 posts identified initially, 464 posts about COSP were considered relevant; majority (98%) of the conversations were from adults (>18 years). Work status was mentioned in 52 conversations. Patients/caregivers discussions across social media platforms were around the symptoms (62%) and causes (58%) of eye pain. Patients mentioned suffering from symptoms associated with COSP including— headache/head pressures, dry/gritty eyes, light sensitivity etc. Patients posted that their COSP impacts day-to-day activities such as reading, driving, sleeping as well as their social, mental and functional wellbeing.

Conclusions:

Insights from this study reported patients’ experiences, concerns, and the adverse impact on overall QoL. COSP imposes a significant burden in patients that spans multiple aspects of daily life. Clinical Trial: Not Applicable


 Citation

Please cite as:

Sloesen B, O’Brien P, Verma H, Aasaithambi S, Parashar N, Mothe RK, Shaikh J, Salzger M, Syntosi A

Patient Experiences and Insights on Chronic Ocular Pain: Social Media Listening Study

JMIR Form Res 2024;8:e47245

DOI: 10.2196/47245

PMID: 38358786

PMCID: 10905354

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