Dr Lorna Fern, National Cancer Research Institute Teenage, Young Adult and Germ Cell Clinical Studies Group and Susie Aldiss, University of Surrey discuss the James Lind Alliance teenage and young adult cancer priority setting partnership, a national initiative between young people, parents and professionals.
You can find out more about the James Lind Alliance Priority Setting Partnership process here.
The results from the James Lind Alliance teenage and young adult cancer priority setting partnership, a national initiative between young people, parents and professionals identified “What psychological support package improves psychological well-being, social functioning and mental health during and after treatment?” as the top priority for future research.
We know that young people with cancer have very different physical, psychological and social responses to their diagnoses, with distinct outcomes. Yet this patient group is less likely to be involved in research than children or older adults, which has contributed to a knowledge gap and poorer improvements in outcomes. We are delighted that for the first time ever, the research agenda for young people with cancer has been set with those it affects most, young people, their carers, and the healthcare professionals looking after them.
This has been a long and sometimes arduous process, for us as part of the co-ordinating team, and also for the steering group and funders, but it was definitely worthwhile. The Top 10 reflect the breadth of young people’s experiences; recognising that cancer is not always curable, young people are supported by a wide network and that future research should focus not only on drug trials but encompass a holistic approach to care for this group.
We invited young people who had experienced cancer between the ages of 13 and 24, their families, friends, partners, carers and healthcare professionals to identify the questions about teenage and young adult cancer they would like to see answered by research. Almost 300 respondents, (108 young people, 101 friends and family members and 83 professionals) submitted 855 potential research questions. After a lengthy process involving merging similar questions, searching the literature for questions which were already answered or programs of research which were ongoing; respondents were then asked to prioritise 104 questions, 30 of which were taken to a final face-to-face workshop with young people, parents and professionals. The top 10 were then identified.
Critical to the exercise were the young people on our steering group who stayed with us for the duration of the project and contributed to all parts of the process.
Being part of a wide group of TYA patients at the workshop, it was amazing to see our views reflected in the top 10 questions. I think everyone came into the meeting having a corner to fight for; being in follow up as a patient, and the fact that I’m involved in a lot of clinical trials groups, meant that I wanted to see follow up procedure and access to clinical trials appear on the questions list. But speaking to the clinicians, nurses, health care providers, parents and patients helped me realise just how much we have to do elsewhere in the TYA cancer experience, from GP and primary care awareness to psychological support services. It was inspiring to see the outcome of the JLA philosophy of every voice being heard: everyone left the workshop having been represented in the top 10. I hope now that funders recognise that this top 10 list is the comprehensive set of priorities which we need to focus on if we are to really improve the way we support everyone who, directly or not, experiences TYA cancer.
Max Williamson, steering group member and NCRI TYA/G Group and Consumer Forum member
The Top 10 were identified as:
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?
The TYAPSP Co-ordinating team: Susie Aldiss, Dr Lorna A Fern, Dr Bob Phillips, Professor Faith Gibson.