Retinopathy of prematurity: Overview and highlights of an initiative to integrate prevention, screening, and management into the public health system in India

PURPOSE: In India, more than 800 special newborn care units (SNCUs) have been established since 2008 in government facilities. More preterm infants are now surviving and blindness from retinopathy of prematurity (ROP) is increasing. The aim of the Queen Elizabeth Diamond Jubilee Trust's initiative (2012–1019) was to improve the quality of neonatal care and integrate ROP services into the government health system using expertise in the government and nongovernment sector in four states in a sustainable and scalable manner. METHODS: State Ministries of Health were engaged and collaboration was established between three government programs (Ministry of Health and Family Welfare, Rashtriya Bal Swasthya Karyakram, and blindness prevention) and relevant professionals. Extensive training took place and equipment was provided. Implementation was guided by a multidisciplinary National Task Force and was monitored by state coordination committees. The Task Force appointed technical expert groups to support implementation through advocacy, information, education and communication materials, operational guidelines, a competency-based training curriculum, and an online database and website. RESULTS: Twenty-two ophthalmologists in government facilities were trained to screen for ROP and nine to treat ROP. Almost 13,500 preterm infants were screened in 17 SNCUs and 86% of the 456 infants with sight-threatening ROP were treated. An educational resource using latest pedagogy based on key domain areas for best practices for small and preterm neonates including ROP has been developed and pilot tested and is being evaluated and scaled up. CONCLUSION: All four states are scaling up services or have plans to scale up, and several other states have started the initiatives.