Involving young people in cancer research

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Published: 23 Nov 2016
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Lorna Fern - Teenage and Young Adult Clinical Studies Group, NCRI, UK

Lorna Fern speaks with ecancertv at NCRI 2016 about the challenges and solutions of involving young people in cancer research. 

She discusses that the 10 year data looks at the key cancers among young people, such as leukaemia, lymphoma, bone and soft tissue sarcomas, brain and central nervous system, amongst others.

Today we presented ten year data looking at participation of teenagers and young adults into National Institute of Health research, Cancer Research Network trials. And we’ve looked at the key cancer types in young people so that’s leukaemia, lymphoma, bone and soft tissue sarcomas, male germ cells and brain and central nervous systems. What we’ve noticed is that there has been a lot of fluctuation in recruitment across the ten years.

In the first six years there was an increase for young people aged 15-19, so year on year what we saw was a subsequent increase of recruitment, and for the 20-24 year olds we saw a similar but not identical pattern but in 2010 the accrual rates were higher than they had been for 2005. What we identified was that that was related to five key factors and predominantly a lot of that is about trial availability. So during that six years what we saw was the opening of cancer trials in key indications that affect young people, so for example Hodgkin’s disease, a brain cancer study and also osteosarcoma, so that really improved recruitment for that age group.

The other thing that happened during that time period was that we saw what we call the appropriateness of the study design so the age parameters that are applied to the clinical trial entry criteria. What we had was two studies that extended their upper age from 18 up to 24 and then from 16 to 24 making that trial accessible for a larger number of young people because you’ve increased that upper age eligibility criteria. So those were two key factors that were responsible for that improvement.

When we published the two-year data we worked quite closely with the clinical studies groups within the NCRI and we identified that actually within those professional adult communities and with the paediatric communities they weren’t aware that they weren’t recruiting young people to their studies. So we had meetings between the adult and paediatric germ cell groups and also the adult and the paediatric brain group. That increased awareness amongst the professional community we think also influenced that increase in recruitment.

The other thing we’d identified was about the acceptability of the trial which wasn’t necessarily drawn from that quantitative data but was around some qualitative work that we’d done elsewhere. We knew that actually the acceptability of trial design to both the healthcare professional and the patient was a key determinant of whether the healthcare professional would offer the study and whether the young person was likely to accept.

Within those five parameters, we published that in 2014, and what we’ve done just recently is we’ve gone back and we’ve looked at accrual trends over the past four years and what we saw is that year by year increase wasn’t sustained and there has been actually a year by year attrition in accrual rates. When we look at the model, the five ways model, what you can clearly see is that it’s related to trial availability. So there are no first line trials for young people presenting with Hodgkin’s disease which is a key cancer for that age group, osteosarcoma, another key cancer and also testes. There is a lot to do about the availability of first line studies for young people.

Moving forward, in terms of how we can work to improve participation again for young people it’s very much a collaborative approach which is what we do here at the NCRI and it involves multiple stakeholders. We are working very closely now with the local cancer research networks who’ve now taken on the responsibility of doing prospective monitoring of all young people who come into their networks and whether they’re offered cancer trials or not which is a great thing because the data that we have looks at first line studies. For some of those cancer types, for example testes, the survival for testicular cancer is in excess of 95% and so it will allow us to see that actually if there’s no first line study available are they entering a study which may add to, say, our biological and genetic knowledge of that disease, in order to allow us to tailor less toxic therapies for young people in the future.