National Pilot Initiatives on Diabetic Retinopathy and Retinopathy of Prematurity Develops Health System Models to Prevent, Screen and Treat Sight of Millions of Indians

• The DR and ROP  initiatives helped strengthen health systems (particularly in tackling Non-communicable Diseases) in 14 states, including Telangana and Andhra Pradesh
• The ROP and DR initiatives has convened several meetings to bring together various National Government health programmes: for blindness control, for NCDs and for child health
• The Diabetic Retinopathy initiative screened 60,970 people with diabetes and set the model for Diabetic Retinopathy management in India
• The Retinopathy of Prematurity initiative has screened 10,392 preterm infants in Sick Newborn Care Units and has developed Quality Improvement package for staff who care for preterm infants.
• National Program for Control of Blindness and  Visual Impairment, Ministry of Health and Family Welfare, Government of India is exploring scaling up the models pilot-tested
• The Queen Elizabeth Diamond Jubilee Trust-funded twin pilot initiatives on diabetic retinopathy and retinopathy of prematurity come to an end in June 2019

In a first of its kind initiative, to address the problem of avoidable blindness in India, the Ministry of Health, Government of India,Public Health Foundation of India (PHFI), The London School of Hygiene and Tropical Medicine (LSHTM), The Queen Elizabeth Diamond Jubilee Trust and partners successfully implemented two pilot initiatives focusing on a comprehensive health system approach to Diabetic Retinopathy (DR) and Retinopathy of Prematurity (ROP). This was implemented in 14 states across the country between 2014-2019.

The initiatives were implemented by The Public Health Foundation of India’s Indian Institute of Public Health, Hyderabad (IIPH-H) with technical support from the London School of Hygiene & Tropical Medicine (LSHTM) in 10 states for DR and 4 states for ROP. Apart from prevention, screening and treatment, the key successes of the initiatives were providing world-class training and equipment, effective advocacy and increasing public awareness about these two conditions. Importantly, they have set the standard for tackling India’s Non-Communicable Diseases (NCD) burden through the health system, and have made a key impact on India’s public health policy framework.

A National Task Force for DR and for ROP were established by the Ministry of Health, and each appointed Technical Expert Groups to develop specific outputs, such as operational guidelines, and materials for health education and to increase public awareness on these conditions. District and State coordination meetings have also been held, to discuss progress and challenges, and how they could be overcome. The twin pilot initiatives on Diabetic Retinopathy (DR) and Retinopathy of Prematurity (ROP) were part of a five-year, multi-million-pound grant by the Queen Elizabeth Diamond Jubilee Trust.

Between June 12 and 14 the city will host a national dissemination meeting to mark the end of two large scale initiatives for the prevention of blindness from diabetic retinopathy (DR) and retinopathy of prematurity (ROP), which impact the vision of millions of Indians. The event will see participation from experts in eye care, neonatal care, diabetes and public health from the public and private sectors, and many other stakeholders and partners. Delegates at the meeting will hear from partners who have delivered these successful initiatives, which are already being scaled up in other districts and States across the country.

Diabetic Retinopathy Initiative

Approximately 65 million adults  and 128,500 children in India are living with diabetes and one in five people with diabetes have some degree of DR (14.6 million in India) and one in ten (7.3 million) has the vision threatening form of DR.¹

In 2014, PHFI conducted a situation analysis in 11 major cities across India, and identified major gaps in the awareness, knowledge and skills of physicians and eye care providers on DR. The analysis also noted a lack of awareness amongst people with diabetes of the risk to their sight from DR. The Diabetic Retinopathy Initiative was designed to develop and integrate services for the prevention, early detection and management of DR into government health systems. The project was implemented in 53 government facilities in 10 States in India, with 24 partners.

Key achievements of DR initiative

• 60,970 people with diabetes have been screened, and 4072 have been treated for DR.
• 6069 Accredited Social Health Activists (ASHAs) and Auxiliary Nurse Midwives (ANMs) were trained to motivate people with diabetes to go for DR screening
• 164 optometrists/ophthalmic assistants were trained in DR screening
• 445 physicians received training under a Certificate Course in Diabetic Retinopathy to increase their knowledge on how to reduce the risk of DR and the need for annual retina examination
• 40 ophthalmologists in 10 states were trained in the diagnosis and management of DR and supplied the necessary equipment
• 60 Non Communicable Diseases Clinics at Community Health Centres (CHCs) have been strengthened under the Diabetic Retinopathy initiative
• Peer support groups for adults, and for young people with diabetes have been established
• Indian Institute of Public Health Hyderabad has an active dedicated national toll free helpline for diabetes and related complications

Retinopathy of prematurity initiative

Retinopathy of prematurity (ROP) is a major cause of blindness in children in India. Before PHFI’s ROP initiative, there were no national services in place to detect and treat ROP in India. There was little knowledge of the condition and how to prevent it within neonatal care facilities, nor understanding of the need to screen and treat the condition within the first 30 days of life.

A situational analysis conducted in eight states in 2014-15 showed that 11% of babies born in India are preterm, 10% of whom are at the risk of ROP.

The ROP initiative was implemented in 22 Special Newborn Care units in District Hospitals and Medical Colleges in four states involving 10 partners in Madhya Pradesh, Maharashtra, Odisha and Telangana.

In May 2019, HRH Countess of Wessex visited Hyderabad’s ROP centers and interacted with parents of preterm infants, doctors and nurses

Key achievements of ROP initiative

• 10392 preterm infants were screened for ROP
• 317 babies received sight saving treatment
• 606 pediatricians have been trained, including under the Quality Improvement initiative
• 574 nurses in Special Newborn Care Units have been trained in how to prevent ROP and assist in screening
• 28 ophthalmologists have been trained to screen for ROP

Dr. Sangeetha Abrol, Deputy Director General, National Program for Control of Blindness and  Visual Impairment, Ministry of Health and Family Welfare, Government of India said, “The DR-ROP initiatives are a signal achievement and a sign of India’s ability to pilot and execute complex, multi-state interventions targeting some of our most vulnerable populations. We congratulate all our partners and look forward to working with them in taking these lessons across the nation.”

“The DR-ROP initiatives are one-of-their-kind. They have blazed a trail, and set an example not just for India, but also other middle-income countries that are struggling to tackle these conditions. It has been my privilege and honour to help deliver the first set of steps to tackle these complex and growing conditions,” said  Prof. GVS Murthy, Director, Indian Institute of Public Health, Hyderabad.

Clare Gilbert, Professor of International Eye Health, London School of Hygiene & Tropical Medicine said, “ROP and DR are two complex eye conditions that need a range of strategies and systems in place to prevent, identify, treat and manage over time. Working against great odds, PHFI and their partners in the government and NGO sectors have shown what is possible through collaboration and commitment, and everyone involved should feel very proud of what they have been able to achieve.”

Andrew Cooper, Director of Programmes, The Queen Elizabeth Diamond Jubilee Trust said, “The Trust is immensely proud of its partnerships with the government of India and PHFI. Our aim was to run projects that would have the biggest impact on the most lives, and the DR-ROP initiatives have been a great example of our mission to bring quality eye care to all those who need it. It’s a legacy which will touch the lives of millions, long into the future.”

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