If you were to ask any TYA cancer professional what they think is the most important research question to be answered or where we should be focusing our research efforts, I am sure you would receive a myriad of answers. This is likely to depend a little on your own specific areas of interest or even on your professional background, but you would expect that buried in all of those thoughts there would be common themes, but how to discover them? 

Pivotal to the TYA philosophy of care is ensuring that young people’s voices are heard too.  And what about capturing the views of families and carers who have lost a loved one? Bringing all of this vital information together in a systematic way will provide a mandate for driving TYA cancer research forward. It will allow potential funders to focus how they might best utilise their funds to support this vital research.

Overseen by the James Lind Alliance and with funding support from Teenage Cancer Trust, CLIC Sargent and Children with Cancer UK, the Teenage and Young Adult Cancer Priority Setting Partnership (TYAPSP) was launched to undertake this enormous task.

TYAC was privileged to be invited to the final TYAPSP workshop held at the RCPCH in London on the 19th January. The event was the final distillation of over 800 potential research questions to address many aspects of TYA cancer care, which were then concentrated into 10 priority research questions, to form the basis of a TYA cancer research strategy. This exercise brought together an entire spectrum of individuals with experience with TYA cancer, including young people themselves as well as families and carers.

The workshop started out with a list of 30 questions developed from all of the previous engagement work of the TYAPSP, with the task of identifying the ‘Top 10’ as well as prioritising the remaining 20 research questions or ideas. We progressed this work in groups through 3 interactive sessions on the day, with the groups being changed around each time. Lots of debate and discussion took place amongst all participants. By the end of the day, the ‘Top 10’ research priorities had been agreed, with a final flurry of discussion right at the very end.

 The final ‘Top 10’ was released on Tuesday 23rd Jan 2018 and is set out below:

  1. What psychological support package improves psychological well-being, social functioning and mental health during and after treatment? 
  2. What interventions, including self-care, can reduce or reverse adverse short and long-term effects of cancer treatment? 
  3. What are the best strategies to improve access to clinical trials? 
  4. What GP or young person strategies, such as awareness campaigns and education, improve early diagnosis for young people with suspected cancer? 
  5. What are the best ways of supporting a young person who has incurable cancer? 
  6. What are the most effective strategies to ensure that young people who are treated outside of a young person’s Principal Treatment Centre receive appropriate practical and emotional support? 
  7. What interventions are most effective in supporting young people when returning to education or work? 
  8. How can parents/carers/siblings/partners be best supported following the death of a young person with cancer? 
  9. What is the best method of follow-up and timing which causes the least psychological harm, while ensuring relapse/complications are detected early? 
  10. What targeted treatments are effective and have fewer short and long-term side-effects?

These priority areas address all elements of a cancer ‘pathway’ and aim to improve awareness amongst professionals, empower young people to engage with health services and facilitate prompt diagnosis. The questions also aim to identify the most effective treatments for young people, as well as how to provide the optimal support for families during and after treatment. Other priority questions address re-engaging with education or employment, minimising the long-term effects of cancer treatment, the support of young people whose cancer cannot be cured and the of support bereaved families and carers.

This is the most comprehensive research framework in the field of TYA cancer that has ever been developed and the James Lind Alliance,their respective funders and all of those that contributed to this piece of work should be thanked and congratulated.  This should set the research landscape for TYA cancer for many years to come, cementing the UK’s place as the world leader in TYA cancer care.