Retinoblastoma in Uganda

Dr Keith Waddell, Africa Inland Mission, Uganda

Retinoblastoma is an aggressive cancer affecting the eyes of small children. In Britain, only around 25 children are affected annually and though some may lose an eye, their lives are saved by modern treatment. By contrast, in Africa the disease seems much more common and sadly is usually fatal. The reason for the frequency is not yet known. The reason for the poor outcome is much more obvious – families often live in remote places and struggle with other problems like shortage of food, and so often delay coming for treatment. Also medical facilities are far behind those in the West. In Uganda we do have access to radiotherapy but there is only one rather elderly machine for all cancer patients in the whole country. In Britain, chemotherapy has resulted in amazing improvements, but it is not yet available to us.

Improving the situation

Recently we eye doctors in Uganda have decided it is high time to tackle this unacceptable situation. In 2006 we set up the ‘Uganda Retinoblastoma Study’ based at Mbarara University in the south-west of the country. Our partners in the UK are York and Leeds Universities and we have funding from Cancer Research UK. We are affiliated to the UK Children’s Cancer and Leukaemia Group, so we are receiving generous help from colleagues in Britain. We are trying to recruit all children diagnosed with retinoblastoma in the country into the study and our first aim is to improve treatment.

When children arrive at hospital, their treatment usually has to begin with removal of the eye containing the tumour. In the past most went home with no further treatment, which was why the outcome was so awful. The tumour had often already spread outside the eye and radiotherapy was essential to save their lives, but most did not get it. So an important part of our project is a team of field workers to follow up the patients at home. This is not easy because few have addresses and they are scattered all over the country. The workers have to be able to travel long distances often on rough tracks to find the far-flung villages. They also have to be fluent in the many languages we have in Uganda. Surprisingly, we can sometimes make contact by mobile phones as these are becoming common and often someone in a village has one. In this way we have greatly increased the number of children receiving radiotherapy and several lives have been saved. We also need workers who can visit patients in hospital to ensure they have money for food and necessities, as they have to stay for two months for radiotherapy.

Understanding more about retinoblastoma

As well as improving treatment, the project is also a scientific study. The first part is to document how many children are affected by retinoblastoma and what is happening to them. Previously this was largely guesswork as many never returned to hospital. But now, thanks to our home visiting team, a first in Africa for this disease, we are at last truly finding out what happens. Sadly the news is very bad, as we feared. We are also confirming the high numbers of children with the disease, and we already have around 150 cases on our database.

The second part of the research is a case control study, with the controls being children who have other eye diseases and whose parents have agreed to answer a questionnaire and allow blood samples to be taken. These will be analysed later, comparing cases and controls and looking for clues as to why retinoblastoma is so common in Africa.

We have already collected enough information to show that we are still saving only a few lives. It is imperative to do something more. Chemotherapy in Britain has produced dramatic improvements. In a very exciting development we are now setting up a chemotherapy trial. Can we do it in remote African areas? Will it be safe? And above all will it save lives? I hope that in a year’s time I shall be able to report back that the answer is yes.