Patient perspectives on dry eye disease and chronic ocular surface pain: Insights from a virtual community-moderated dialogue

Purpose: To understand patients' perspectives on living with dry eye disease (DED), and on the unmet needs in DED and chronic ocular surface pain (COSP) management.

Methods: A moderated, structured discussion with patients with ocular surface diseases and healthcare professionals (HCPs) was conducted using a virtual platform to capture patients' journey with DED, their opinion on unmet needs, and design and conduct of clinical trials in DED and COSP.

Results: Nine participants, including four patient representatives from patient organisations, one ophthalmologist and one optometrist participated in the discussion. Patients had DED of varying severity and aetiology; three patients had Sjögren's. Over 4 weeks, 785 posts were entered on the platform. Prior to diagnosis, patients rarely associated their symptoms with DED. Convenience and symptomatic relief scored higher than treating the disease. Patients expressed the need for plain language information and dialogue with knowledgeable and sensitive HCPs. Online forums and social media were suggested as key recruitment resources, whereas convenience and safety concerns were highlighted as main barriers to enrolment. The need for the inclusion of outcome measures that have a real impact on patients' experience of their condition was highlighted. Both target product profiles were received positively by participants, highlighting the twice-daily dosing regimen and convenience of the products. Participants acknowledged the value of digital tools and suggested the need to feel valued post-trial.

Conclusions: This moderated dialogue provided actionable insights on the unmet needs in DED and useful inputs for consideration when designing future clinical trials for DED and COSP.


Barbara Caffery, Rebecca Petris, Katherine M Hammitt, Michela Montecchi-Palmer, Sameena Haque, Jean-Pierre Malkowski, Stefano Barabino


Journal: European Journal of Ophthalmology
Volume: 33
Issue: 2
Pages: 856 - 864
Year: 2022
DOI: 10.1177/11206721221125263

Further Study Information

Current Stage: Completed
Funding source(s): This work was supported by the Novartis Pharma AG, Basel

Health Area

Disease Category: Eyes & vision

Disease Name: dry eye disease

Target Population

Age Range: Unknown

Sex: Either

Nature of Intervention:

Stakeholders Involved

- Clinical experts
- Patient/ support group representatives

Study Type

- Patient perspectives


- Semi structured discussion

A moderated discussion took place over a 4-week period during June 2020 and July 2020 on a virtual community platform (Within3, Lakewood, Ohio, USA). Nine participants from three continents, including four patient representatives from patient organisations, one ophthalmologist, and one optometrist, participated.

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