The Teenage and Young Adult Cancer Priority Setting Partnership (TYAPSP) was launched to find 10 priority research questions to form the basis of a TYA cancer research strategy. This work was overseen by the James Lind Alliance with funding from Teenage Cancer Trust, CLIC Sargent and Children with Cancer UK.

Bringing this vital information together in a systematic way will provide a mandate for driving TYA cancer research forward and allow potential funders to focus how they might best use their funds to support this vital research.

In a previous post, TYAC announced the Top 10 research questions which were selected by a wide range of individuals with experience with TYA cancer, including young people as well as families and carers.

The Top 10 research questions were narrowed down from more than 800 options and another 20 were discussed but not placed in order of priority. These were as follows:

  • What are the long term physical effects of a cancer diagnosis and treatment and how long do they last?
  • What factors affect the time to diagnosis and what outcomes are affected?
  • What can young people do to help their recovery after chemotherapy or radiotherapy?
  • What key factors (both cancer and individual) determine whether a treatment plan for children or adults will give better outcomes?
  • What are the best ways to support young people getting back to 'everyday' life after treatment?
  • How common is psychological distress and/or mental health problems in young people following treatment?
  • What is the most effective way of supporting young people with relapsed cancer?
  • What are the factors that should determine stopping treatment when the young person cannot be cured?
  • What are the factors that predict life threatening chemotherapy side effects?
  • At the end of treatment and during long term follow up, what support services improve psychological well-being, social functioning and mental health?
  • For young people with incurable cancer, what methods, techniques or strategies for communication can help them to talk with their family and friends about their situation?
  • What are the most effective strategies for engaging primary care professionals (e.g. GPs) to listen to young people?
  • What interventions are most effective in supporting young people who are experiencing fatigue/tiredness when returning to work or education?
  • What is the best treatment for brain cancers to increase survival and decrease toxicity?
  • What causes problems with cognitive functioning (chemobrain), how long do they last and what are the most effective treatments and strategies?
  • What are the best strategies for detecting and treating second primary cancers early?
  • For young people with incurable cancer, how should healthcare professionals communicate with them to improve quality of life and patient experience?
  • What are the long-term physical effects of stem cell transplants, how long do they last and how could they be reduced?
  • For young people with incurable cancer, how should parents/carers communicate with them to improve quality of life and experience?
  • What are the support needs of the family following the death of a young person with cancer?

This project has taken three years to complete and is the first time research priorities have been set out in this way for TYA cancer. For the first time ever, TYAC has a list of unanswered questions identified by young people, parents, siblings, friends, partners and professionals, which will allow funders and researchers to identify areas where funds and research efforts are best directed.