Perception of care and barriers to treatment in individuals with diabetic retinopathy in India: 11-city 9-state study

BACKGROUND: Diabetic retinopathy is a leading cause of visual impairment. Low awareness about the disease and inequitable distribution of care are major challenges in India. OBJECTIVES: Assess perception of care and challenges faced in availing care among diabetics. MATERIALS AND METHODS: The cross-sectional, hospital based survey was conducted in eleven cities. In each city, public and private providers of eye-care were identified. Both multispecialty and standalone facilities were included. Specially designed semi-open ended questionnaires were administered to the clients. RESULTS: 376 diabetics were interviewed in the eye clinics, of whom 62.8% (236) were selected from facilities in cities with a population of 7 million or more. The mean duration of known diabetes was 11.1 (±7.7) years. Half the respondents understood the meaning of adequate glycemic control and 45% reported that they had visual loss when they first presented to an eye facility. Facilities in smaller cities and those with higher educational status were found to be statistically significant predictors of self-reported good/adequate control of diabetes. The correct awareness of glycemic control was significantly high among attending privately-funded facilities and higher educational status. Self-monitoring of glycemic status at home was significantly associated with respondents from larger cities, privately-funded facilities, those who were better educated and reported longer duration of diabetes. Duration of diabetes (41%), poor glycemic control (39.4%) and age (20.7%) were identified as the leading causes of DR. The commonest challenges faced were lifestyle/behavior related. CONCLUSIONS: The findings have significant implications for the organization of diabetes services in India.