How to set up and manage an effective ROP programme: A case study from India

In this video on this step, GVS Murthy shares his experience in guiding the pilot ROP programme in India over a period of four years. Based on the success of the pilot India is now in a position to scale up the programme.

As you watch the video, consider the importance of establishing some organisational structures that can connect multiple teams together, support parents and deliver a high quality service. Share your impressions about this programme and your perspectives on the sustainability and scale up for this programme in the Comments.

The following text is adapted from ‘The role of advocacy and communication in reducing ROP in India.’ Comm Eye Health 2018 Vol 31 No. 101, 201.

Low birthweight and prematurity are two major causes of neonatal and infant mortality in India. Nearly 7.5 million low birthweight and 3.5 million preterm infants are born in India every year, making it the country with highest number of preterm births in the world. With the aim of lowering perinatal and neonatal mortality rates, there has been a drive by the Government of India’s National Rural Health Mission, to expand neonatal care facilities. This impetus has been supported by the National Neonatology Forum (NNF), United Nations International Children’s Fund (UNICEF) and other agencies, resulting in the opening of a number of Neonatal Intensive Care Units (NICUs) and more than 800 Special Newborn Care Units (SNCUs).

However, lack of infrastructure, human resources, knowledge and skills have led to variability in the quality of services provided and services for ROP were not included as an activity in SNCUs. These, along with some other contributing factors, led to an increase in the number of children becoming blind from retinopathy of prematurity (ROP).

India accounts for nearly 10% of the global number (32,000) of preterm infants becoming blind or visually impaired from ROP every year. Visual loss from ROP will continue to increase unless neonatal care includes services for the detection and treatment of ROP. This required strong advocacy efforts, communication and collaboration among all the stakeholders (neonatologists, nurses, ophthalmologists, parents, social workers and the government) in the following aspects:

• High quality neonatal care including availability of equipment and establishment of appropriate care protocols
• Mandatory ROP screening of babies at risk,
• Availability of trained ophthalmologists to screen and treat babies with ROP
• Information for parents to ensure follow up.

The National Programme for Control of Blindness (NCPB) along with non-government organisations such as the Queen Elizabeth Diamond Jubilee Trust, who funded the programme (2013-2019, and the Public Health Foundation of India, who managed the programme, were pivotal in advocacy and communication efforts with the Government of India in formulating national guidelines and policy regarding ROP. A National ROP Task Force was constituted under the NPCB and the Ministry of Health. The Task Force brought together all the relevant professional experts and other stakeholders, who advised on the initial direction of the programme and provided impetus to help bring about change in policy.

The Task Force also monitored the programme, and produced health education materials for parents, a quality improvement package for neonatal staff and a competency framework for training ophthalmologists. An online system for data collection was also developed.

Before funding ended, several of four state governments had committed to scaling up the services to other district SNCUs, and several other states were provided with equipment so they could start a programme too.