Barriers and Determinants of Referral Adherence in AI-Enabled Diabetic Retinopathy Screening for Older Adults in Northern India During the COVID-19 Pandemic: Mixed Methods Pilot Study

Background: Diabetic retinopathy (DR) is a leading cause of blindness globally. DR has increasingly affected both individuals and health care systems as the population ages. Objective: This study aims to explore factors and identify barriers associated with nonadherence to referral recommendations among older adult participants after DR screening (DRS) during the COVID-19 pandemic. Method: This paper presents findings from a pilot study on artificial intelligence-enabled DRS conducted in two districts in Punjab, India (Moga and Mohali) during the COVID-19 pandemic. The screenings were conducted from March to June 2022 at community health center Badhani Kalan in Moga and from March to June 2021 in community settings (homes) in Block Boothgarh, Mohali. Participants were referred to the district hospital for an ophthalmological review based on artificial intelligence-enabled screening. After 1 month, the participants were contacted by telephone to assess adherence to the referral recommendations. Participants who did not adhere to the referral were then interviewed alongside health care providers to understand the barriers explaining their nonadherence. Results: We aimed to recruit 346 and 600 older adult participants from 2 sites but enrolled 390. Key challenges included health facility closures due to COVID-19, low motivation among health personnel for recruitment, incomplete nonparticipation data, and high participant workloads. Approximately 45% of the participants were male and 55% female. Most participants (62.6%) were between 60 and 69 years old, while 37.4% were 70 or older, with a mean age of 67.2 (SD 6.2) years. In total, 159 participants (40.8%) were referred, while 231 participants (59.2%) were not. Only 23 (14.5%) of those referred followed through and visited a health facility for ophthalmological review, while 136 (85.5%) did not pursue further evaluation. Our analysis revealed no significant differences in the characteristics between adherent and nonadherent participants, suggesting that demographic and health factors alone do not predict adherence behavior in patients with DR. Interviews identified limited knowledge about DR, logistical challenges, financial constraints, and attitudinal barriers as the primary challenges. Conclusions: This study, conducted during the COVID-19 pandemic, showed suboptimal adherence to referral recommendations among older adult patients due to knowledge gaps, logistical challenges, and health system issues. Quantifying and understanding adherence factors are crucial for targeted interventions addressing barriers to referral recommendations after DRS. Integrating teleophthalmology into and strengthening infrastructure for artificial intelligence-enabled diabetic retinopathy screening to enhance access and outcomes.