Transforming childhood brain tumour care in South Africa

In South Africa, children with low-grade gliomas and medulloblastomas are often treated by specialists working separately. Unlike in the UK, they do not always have multidisciplinary teams who can collaborate to improve care. The benefit of having these teams is that there is expertise from many areas of care. This can include oncologists, radiologists, neurosurgeons and more. Having a range of expertise is important and ensures each child gets the best care possible.

We caught up with Professor Alan Davidson, whose research we’re proud to fund, to learn how his work is transforming care for children living with these brain tumours. Based in Cape Town, Alan’s work reflects our commitment to supporting research around the world to help everyone affected by brain tumours live longer and better lives.

His research is helping to bridge global gaps in care and ensure that children everywhere have access to better treatment and support. This is particularly true in low-and-middle income countries, where infrastructure and support can be limited.

Would you like to tell us about the main aim of your project?

In a word – multidisciplinarity. South Africa currently has care teams, but people are not working very well together. That’s why the goal of this project was to build local multidisciplinary teams in neuro-oncology to try and change this. To achieve our goals, our paediatric brain tumour working group – which includes experts from neurosurgery, radiation oncology, ophthalmology, endocrinology and civil society, developed the first evidence-based National Protocol for paediatric low-grade gliomas. This protocol offers guidance on every aspect of care for children with low-grade gliomas and consists of over 200 pages of detailed recommendations!

And why was this project necessary?

Low-grade gliomas are the most common childhood brain tumour. This group of tumours is included in the World Health Organisation’s Global Initiative for Childhood Cancer, which aims for a 60% overall survival rate for children with cancer worldwide. But this isn’t ambitious enough for low-grade glioma, since the survival rate already exceeds this. Instead, there needs to be more focus on long term quality of life for these children.

This protocol offers guidance on every aspect of care for children with low-grade gliomas and consists of over 200 pages of detailed recommendations.
Professor Alan Davidson

This is part of a national program to provide uniform treatment for children with the same diagnosis everywhere in South Africa. Most children with a low-grade glioma will receive the drugs vincristine and carboplatin as standard of care… but what happens when this doesn’t work? We need to improve treatment everywhere by providing centralised expertise, and there needs to be a protocol for what happens next – this is what we are aiming to do.

How does the care for children with brain tumours differ in South Africa compared to the UK?

In the UK, the multidisciplinary teams for neuro-oncology are really strong, and there are local teams that discuss care for individuals. In contrast, care in South Africa is less centralised. This is both from a planning point of view, and then the execution at local and national level. This is also the case for many other low- and middle-income countries.

I think South Africa has the raw elements to pull it off like the UK but just doesn’t have the infrastructure. This is where The Brain Tumour Charity funding can really help out. We need to pull together.

What does this mean for children diagnosed with a low-grade glioma in South Africa now? And how will their care improve?

Plainly, if treatment teams are improved, children will do better. We know that children in clinical trials do better than children not in trials. This is because they are receiving the very best care from the clinical trial team to ensure the trial has the best chance of success. From this research alone, we certainly cannot guarantee overnight success in terms of an immediate improvement in outcomes, BUT, families can have the kind of confidence that any family has when their child takes part in a trial.

How do you plan to roll this out for medulloblastoma next?

We started with low-grade glioma since there are more children diagnosed with this tumour compared to medulloblastoma. We intend to use the same methods: a small writing team with multi-disciplinary input and extensive use of published evidence.

But the landscape of medulloblastoma is considerably more complex. The treatment a child receives depends on the tumour’s genetic information, and standard of care is different compared to low-grade gliomas.

Currently, in South Africa we do not have access to molecular diagnostic tools for medulloblastoma. This means that doctors can’t get the crucial genetic information needed to choose the most appropriate treatment for each child.

Also, with publicly funded hospitals and limited private healthcare, there isn’t much space for big tech to change treatment processes in South Africa. That being said, a good thing about this research is that it has links to St. Jude Children’s Research Hospital in the USA, where there is more space for this.

We hope soon to have access to molecular diagnostics for medulloblastoma, and this is going to have implications for decision-making in the context of the protocol.

How important has collaboration been for this research?

Crucial! We couldn’t do it without a huge collaborative effort, and this collaboration predates this specific project. Without these existing relationships, this work would not have been possible.

For any brain tumour, especially childhood low-grade glioma, we need people to work together to make a difference in care. This also means we need adult and paediatric care to work together.
Professor Alan Davidson

We have a number of important local and national projects that are ongoing in South Africa to support better care of childhood brain tumours. Firstly, a well-established multi-disciplinary team at the University of Cape Town manages all our paediatric neuro-oncology and regularly provides expert advice to other centres. Our team also have trained specialists from many countries across the region. Additionally, we hold an annual paediatric brain tumour workshop which bring experts together from across South Africa and the surrounding region.

What inspired you to carry out this research?

When I trained, childhood brain tumours were not a big priority in South Africa. This is despite them being the second most common childhood cancer after leukaemia. So, my involvement in this work was shaped by colleagues with an interest in paediatric brain tumours who got me involved. And of course, being such an unmet need it seemed like a logical step for me. Essentially, care was poor and needed to change, and I knew I wanted to be part of it.

Also, the multidisciplinary nature of the work is a reward in itself. It’s such a pleasure to work with a smart, engaged and enthusiastic team – some of whom I would never have met if I hadn’t started this journey.

Essentially, care was poor and needed to change, and I knew I wanted to be part of it.
Professor Alan Davidson

What does the future hold for children in South African facing a brain tumour diagnosis, now you’ve done this research?

Forgive the cliché, but the future is bright, I think. We are trying to develop a national research platform to provide the kind of infrastructure that the Clinical Trials Unit in Birmingham provides to the UK. We need trials driven by scientists and clinicians, not by pharmaceutical companies.

We envision that The Child & Adolescent Blood and Cancer Research Platform will be housed at our unit at the Red Cross War Memorial Children’s Hospital, in Cape Town and will provide a good home for the current national trials in childhood cancers and haematology.

Do you anticipate this knowledge to be rolled out to other countries? If so, how?

This is a great question. Including neighbouring countries in clinical trials would be hard, but sharing knowledge to kick-start action in other countries would be the dream. That would be the 2.0 to this project, but it does need us to get it right first.