Abstract
Purpose :
To assess the unmet needs of inflammatory eye disease patients and their caregivers, with a goal towards developing a patient-centered smartphone application (app) for learning about and managing uveitis.
Methods :
Prospective cross-sectional survey of uveitis patients and their caregivers. The data collected included: demographic information, time since diagnosis, educational level, smartphone ownership/use, smartphone type, use of health apps, interest in a uveitis app, current modalities for learning about uveitis, understanding and desired information about uveitis, challenges of being a uveitis patient/caregiver, current challenges in disease management, and the relative importance of a variety of possible app features.
Results :
79 completed surveys were collected from 74 patients and 5 caregivers. Among the respondents, 60% were female, 44.7% were Black or African American, and a majority (80%) of patients were aged between 30-74 years. 66% were uveitis patients or caregivers for less than 5 years, 92% used a smartphone regularly, and 97% expressed interest in a smartphone app for uveitis patients. While 60% of respondents reported having health-related apps on their phones, 58% did not use them regularly, and 85% did not currently use any smartphone apps to manage or learn about uveitis. Important features of a potential smartphone app for patients and caregivers included educational materials about uveitis (96%), accessibility considerations such as text size and text-to-voice features (95%), as well as reminders for appointments (67%), medications (89%) and lab work/blood tests (94%). Challenges faced by patients and caregivers included those related to ocular symptoms, understanding of the disease process, transportation, and the associated psychiatric burden. Patients and caregivers generally reported a moderate understanding of the disease process (55%) but a good understanding of uveitis treatment (81%) and the importance of follow-up testing (90%).
Conclusions :
There is an unmet need for a patient-centered smartphone app for uveitis, featuring understandable educational content, reminders for appointments and medications, and a customizable interface to accommodate vision changes. Patients and caregivers who are motivated to seek information about uveitis, including newer patients or those with lower understanding about the disease, could especially benefit from a dedicated uveitis app.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.