Barriers to timely presentation for appropriate care of retinopathy of prematurity in Odisha, Eastern India

PURPOSE: To analyze the causes for late presentation in a series of patients with advanced retinopathy of prematurity (ROP) in a tertiary eye care institute in Eastern India. METHODS: We analyzed our medical records and ROP database retrospectively from 2007 to 2015 and prospectively thereafter till 2017 to identify the factors for late presentation in babies with advanced ROP (stages 4 and 5). RESULTS: A total of 71 eligible subjects were analyzed. The mean chronological age was 15.1 months (2 months to 14 years). The three important barriers were: (1) the system and neonatal care policy failure (n = 45; 63.3%), (2) parental negligence and ignorance (n = 19; 26.7%), and (3) ophthalmologist's misdiagnosis or unavailability (n = 7; 10%). Majority of the babies (63.3%) were admitted in the neonatal care unit when they were due for ROP screening with an average duration of stay of 35.5 days. CONCLUSION: The main barriers to early screening for ROP were related to availability of trained human resources, ignorance of “parents and health care personnel,” and distance from the point of care. This calls for training of ophthalmologists, advocacy with neonatologists and parents, and create systems for better coordination and compliance of the care providers.