The LINKS & Networks Programme was established at the International Centre for Eye Health (ICEH), London School of Health and Tropical Medicine (LSHTM), 20 years ago to improve the quality and quantity of eye health services in low- and middle-income countries (LMICs), principally in Africa.
The need for trained, resourced eye health professionals in LMICs remains as high as ever. Most ophthalmologists and allied eye health workers live and work in the cities, whereas most of the population lives in rural areas. Many thousands of people in LMICs go blind every year from causes that are preventable or treatable. The LINKS & Networks Programme strengthens the capacity of eye health professionals in LMICs to address the priority needs of their patients. Many of the LINKS and Networks capacity-strengthening activities have been featured in Eye News (see references 1–4).
Photo credit: Pak Sang Lee.
An Rb team training visit to Nigeria in 2023.
Thousands of lives have been touched by UK NHS eye health professionals – including ophthalmologists, nurses, optometrists, orthoptists, counsellors and managers – who give their time to teach and train as part of the LINKS & Networks Programme, either in person or online. The programme also works to influence policy and practice through its strong connections with the governments and ministries of health in the countries where it works; for example, it collaborates on development of national clinical guidelines, making a deep and lasting impact on eye health service delivery at many levels. Our article in the international issue of Eye News last year [1] on how ICEH ‘weaves the threads together’ emphasises the benefits of being able to draw on expertise through collaborating across the world in training, research and knowledge-sharing.
One example of how our global networks make an impact is the Retinoblastoma Network, Rb-NET. Retinoblastoma is the most common intraocular malignant tumour in childhood. Delays in diagnosis or inadequate treatment often result in death or loss of vision. Our work has shown that a child with Rb in a low-income country is 17 times more likely to die within three years of diagnosis than a child in a high-income country.
Rb-NET aims to improve the survival and vision of children in LMICs. It does this through workshops and online multidisciplinary team meetings (MDTs), sharing expertise within and between high- and low-income countries worldwide. Our programme of national MDTs is hosted on our website, https://www.rb-net-mdt.org – over 500 specialists from 60 countries are registered and can access MDTs.
Since they began in 2020, over 150 individual children’s treatment plans have been discussed during the MDTs, with 18 LMICs participating in regular national sessions. These empower Rb teams to optimise the treatment available in-country for these children, with learning also applied to those they treat in the future. In 2023 alone, we held 26 Rb-NET MDTs for Rb centres in Afghanistan, Cameroon, Indonesia, Malawi, Nigeria, South Africa and Uganda.
Rb-NET is also a unique platform for global research, which is essential in a relatively rare disease. In 2017 we conducted the first ever global study in Rb, bringing together 278 Rb centres in 153 countries. We have data on more than half the children who presented worldwide in 2017 with Rb; an achievement not matched by any other cancer study to date. Our 2020 follow-up study on outcomes showed that children with Rb in high-income countries have a 99% three-year survival rate, compared with 57% in low-income countries [5].
To evaluate progress and further improve knowledge on the disease we are embarking on the Rb-NET Global Retinoblastoma Study 2024–2027. This study will include even more countries, Rb centres and children affected, which will provide further understanding of the disease and help design strategies to tackle it and improve the chances of survival for children in LMICs who are affected.
We urgently need financial support towards the costs of this project, which will be instrumental in saving children’s lives and sight over the coming years. Please help today by contacting Marcia Zondervan for more details on how to make donations and bank transfers.
References
1. Zondervan M, Faal H, Bascaran C. The International Centre for Eye Health: weaving the global threads together. Eye News 2023;30(3):10–3.
2. Arazi M, Bowman R, Fabian ID, et al. Establishing an intra-arterial chemotherapy service for children with retinoblastoma in Nigeria for the first time. Eye News 2023;29(6):32–6.
3. Fabian ID, Astbury A, Nkanga E, et al. The role of virtual Rb-NET Multidisciplinary Team meetings in the management of children with retinoblastoma in low- and middle-income countries. Eye News 2021;27(6):36–8.
4. Foster A, Onyango J, Nkurikiye J, et al. 6.6.2020 – a celebration of international partnerships. Eye News 2020;27(3).:30–4.
5. Global Retinoblastoma Study Group. ‘The Global Retinoblastoma Outcome Study; a prospective, cluset-based analysis of 4064 patients from 149 countries.’ The Lancet, Global health vol.10,8 (2022); e1128-1140.doi;10.1016/S2214-109X(22)00250-9.
