A multi-country look at care and implications of diabetic retinopathy and vision impairment: Perspectives of adults with diabetes and health care providers

Background: Diabetic retinopathy (DR) is a common complication of diabetes and the leading cause of blindness among working age adults.  Progression of DR could be reduced with improved adherence to routine eye screenings and early treatment. Yet, there is insufficient information, from a global perspective, on factors influencing access and uptake of care relevant to DR.  

Methods: Qualitative interviews were conducted with 73 people with diabetes (PWD) and 48 providers in eight countries, which were selected for geographic and economic variability.  Almost one-half of the PWD (45%) had DR.  Interviews focused on knowledge, attitudes, service availability and use – and factors that impact them.

Findings: Approximately 20% of PWD were unaware that vision loss can be a complication of the disease—or had been unaware until they faced vision issues themselves.  Both PWD and providers indicated that in a number of cases, awareness about the risk of vision impairment was insufficient to motivate PWD to visit an eye specialist, especially in the absence of symptoms.  Referral delays and absence of a proactive referral process were also noted.  Long waits for service and crowding affected access, particularly in low-income countries.  Participants with DR and experiencing impaired vision reported: job loss and resultant economic hardships; limitations on travel, independence and recreational activities; and challenges to disease management, including self-monitoring.

Conclusion: DR progression, vision loss and the consequences thereof may be reduced with more effective messaging regarding risk, improved referral systems, and improved access to care—particularly in low-income countries.