The main aims of the programme was to decrease ROP as a cause of blindness in children in Peru and Brazil; to demonstrate scalable models which could be adapted for use in other countries of the region; and to develop low vision services in both countries, which could be adapted for use in other countries of the region.
Key findings and lessons from Brazil
The approach adopted was highly relevant, entailing primary prevention of ROP through training neonatologists and nurses to improve neonatal care; secondary prevention, by increasing ROP programmes for detection and treatment of infants with the severe stages of ROP, and tertiary prevention, by building the capacity of low vision services to improve visual function, including children with irreversible visual loss from ROP.
The main focus of each component of the project was capacity building, through improving knowledge as well as skills of neonatologists and nurses, ophthalmologists and low vision therapists. Essential equipment was also provided.
Sustainability was a key finding as the ROP programmes are fully integrated into government health systems. The State sector did not have programmes and considerable advocacy was required, but this was highly successful, leading to creation of new posts in maternity hospitals for ophthalmologists who were selected and appointed by the State Ministry. The programme is not, therefore, dependent on the commitment and energy of a few ophthalmologists, but has the potential to be on-going and hence sustainable as well as to expand to other units.
1. Advocacy with the State Ministry of Health, which led to ROP programs being fully integrated and sustainable.
2. Excellent clinical training and support: high quality ROP programmes require motivated and committed ophthalmologists who have had hands-on practical clinical training by ophthalmologists experienced in examining and treating ROP. They also need to be trained in how to set up, run and manage a program, as in this project. The on-going support, supervision, mentoring and problem solving by the trainers in this project is a model of best practice, maintaining quality as well commitment.
3. Health management information systems for ROP that are integrated into government systems are likely to be used more regularly and have more an impact than stand-alone monitoring systems.
4. National and regional multi-disciplinary workshops provide a mechanism for advocacy, planning, networking, team building, sharing knowledge and problem solving. Other regions would benefit enormously from the experiences in Latin America, where Andrea Zin has played a very major role, supported by regional and international facilitators and experts.
5. The online educational materials provide a means of reaching large audiences at little cost to users.
1. An on-line library of images of ROP and its treatment would provide a useful resource during and after training and to create awareness amongst other staff and parents.
2. A network of the ophthalmologists be developed using social media (e.g. Facebook) to provide a mechanism for sharing experiences and knowledge, to discuss new developments in diagnosis and treatment; to design and undertake simple research studies and to disseminate relevant publications for discussion.
3. Monitoring of the ROP programmes could be improved, and standard data forms and registers would assist in this. Monitoring should include coverage, the number of infants examined and treated, by birth weight group, follow up rates, and rates of regression after treatment.
4. Awareness of the risk and consequences of ROP needs to be raised amongst parents. State and Municipal health systems need to work with neonatologists, nurses and ophthalmologists to improve communication with parents. Neonatologists should take the responsibility for communicating to parents/carers at discharge if the child needs follow up eye examinations.
5. Advocacy with the State Ministry of Health is needed to improve the long term follow up of preterm infants to detect and manage other ocular morbidity associated with preterm birth and ROP (i.e. high myopia and other refractive errors, strabismus, cortical visual impairment). The State system provides this service but not the Municipal system.
Overseas Programmes Manager, CBM UK