JMIR Publications

ABSTRACT

Background:

Diabetic retinopathy (DR) is a leading cause of blindness globally. DR has increasingly affected both individuals and healthcare systems as the population ages. The study aims to explore factors and identify barriers associated with non-adherence to referral recommendations among elderly participants after DR screening (DRS).

Objective:

This study aims to 1) Evaluate the referral adherence rates among elderly participants after AI-enabled DRS and identify the key factors affecting adherence and 2) Identify and analyze the barriers to non-adherence to referral recommendations.

Methods:

This paper presents findings from a pilot AI-enabled DRS conducted in two Punjab districts in India: Moga and Mohali. The screening were conducted from March to June 2022 at Community Health Centre 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 AI-based assessments. After one month, the participants were contacted telephonically to assess adherence to the referral recommendations. Participants who did not adhere to the referral were then interviewed alongside healthcare providers to understand the barriers explaining their non-adherence.

Results:

We aimed to recruit 346 and 600 elderly participants from two sites but enrolled 390. Key challenges included health facility closures due to COVID-19, low motivation among health personnel for recruitment, incomplete non-participation 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, while 37.4% were 70 or older, with a mean age of 67.2 ± 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 non-adherent participants, suggesting that demographic and health factors alone do not predict adherence behaviour in DR patients. Interviews identified limited knowledge about DR, logistical challenges, financial constraints, and attitudinal barriers as the primary challenges.

Conclusions:

This study shows suboptimal adherence to referral recommendations among elderly patients due to knowledge gaps, logistical challenges, and health system issues. Quantifying and understanding adherence factors are crucial for addressing barriers to DR referral adherence in people with diabetes.