Abstract
Purpose :
In recent years, patients have sought to research health conditions and connect with others with similar disease via online support communities. In this descriptive survey study, we examine patient-reported confidence levels related to disease awareness, access to resources, treatment options, and ability to engage with their eye care providers before and after using an online platform. We hypothesize that being a member of this online support community increases patient-reported confidence about their disease.
Methods :
Between November 2021 to December 2022, participants were given a five-question survey about their understanding of glaucoma and treatment using a 5-point Likert scale (not at all confident (1), slightly confident (2), somewhat confident (3), very confident (4), or completely confident (5)) when signing up to be a member of The Glaucoma Community [https://responsumhealth.com/glaucoma/] and then again three weeks later. During this period, participants were able to access educational articles about glaucoma and treatments, connect with peers, and learn about lifestyle habits to support vision. Survey questions assessed participant confidence about their general understanding about glaucoma, treatment options, access to information about glaucoma, confidence in communicating with their glaucoma providers, and patient mental preparedness about living with glaucoma. Statistics were performed using the Chi-square test.
Results :
Survey responses of 79 participants were analyzed. We grouped (4) and (5) as “high confidence” responses and (1), (2), and (3) as “low confidence” responses. Three weeks after joining the platform, when asked about general confidence about glaucoma, there was an increase in high confidence responses (p < 0.01). Participants felt more confident about treatment options (p < 0.01), access to resources (p < 0.01), and in communicating with their eye doctors (p < 0.01).
Conclusions :
This data supports our hypothesis that participation in online communities increases confidence about diagnoses for patients. Online support communities can help patients manage their health conditions beyond provider-related clinical care and have the potential to be an important part of modern healthcare.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.