Objective: To identify the perceived causes for chronic ocular pain (COP) (≥3 months pain duration), its impact on quality of life (QoL) and understand the patient journey from social media posts.

Methods: In this retrospective study, publicly available social media conversations were identified from searches triaged by a combination of automated relevancy keyword algorithm and manual review, and subsequently analyzed post anonymizing for COP content. Twitter, forums, and other (Facebook, Blogs, etc.) platforms were leveraged for the time period February 2020 to February 2021.

Results: A total of 464 (UK=208, US=175, Canada=65 and Australia=16) patient/caregiver conversations on COP were identified.

Top discussion points were symptoms (62%) and causes of COP (58%). Ocular factors (including dry eye disease, thyroid/Graves’ disease, and ocular surgeries) contributed to ~46% of causes identified, while non-ocular factors (including migraine, COVID, and side-effects/withdrawal of medications) contributed to ~54%. The most commonly mentioned symptoms (555) were headache/head pressures (96), dry/gritty eyes (67), light sensitivity (34), insomnia (29), and redness/pink eyes (28). Symptoms impacted all aspects of patients’ QoL: physical day-to-day activities such as reading, driving, and sleeping; emotional wellbeing such as depression/hopelessness, frustration/anger, fear, and suicidal thoughts; functional wellbeing such as difficulty at work/study place, reduced productivity or having to quit their job; social impacts such as being irritated around people, and having a less active social life. Eye drops (58/140 mentions) are the most commonly mentioned treatment option. Common coping strategies mentioned were blue-light filter glasses/eyeglasses (17), and hot compresses (11). Key unmet needs mentioned by patients were failed, improper, delayed diagnosis (62), and lack of effective treatments or appropriate management (30).

Conclusion: Insights from this study reported patients’ experiences, concerns, and the adverse impact on overall QoL. The results can help in better understanding the patients’ perspective, which can be considered during drug development.