Teenagers and young adults (TYA) with cancer often fall between services designed for children and those designed for older adults. The cancers they develop, their experiences of treatment, and the wider impact of cancer on their lives can all be different from other age groups.
Despite this, many of the questions that matter most to young people remain unanswered, and there are still important gaps in our understanding of cancers and treatments in this age group.
To help tackle these gaps, three charities, Teenage Cancer Trust, Children with Cancer UK and Young Lives vs Cancer, came together to fund a James Lind Alliance Priority Setting Partnership (PSP) in 2016. The PSP brought young people with cancer, families, healthcare professionals and researchers together to identify the research questions that matter most, helping to ensure future research is focused on the priorities of those most affected.
Top 10 research priorities in teenage and young adult cancer
The top 10 research priorities were identified at the final workshop of the Teenage and Young Adult Cancer Priority Setting Partnership. A national survey first identified 185 unanswered research questions. These were then refined and ranked through a second survey. In 2018, young people with cancer, parents and healthcare professionals came together to decide which of the final 30 unanswered questions mattered most.
The priorities span the whole cancer journey, from diagnosis and treatment through to life after cancer. They include improving access to clinical trials, understanding how best to support young people's emotional wellbeing, and exploring the impact of cancer on parents, siblings and other family members. The priorities also highlight the importance of improving care and support for young people living with incurable cancer.
The top 10 list of priorities in full:
- What psychological support package improves psychological well-being, social functioning and mental health during and after treatment?
- What interventions, including self-care, can reduce or reverse adverse short and long term effects of cancer treatment?
- What are the best strategies to improve access to clinical trials?
- What General Practitioner or young person strategies, such as awareness campaigns and education, improve early diagnosis for young people with suspected cancer?
- What are the best ways of supporting a young person who has incurable cancer?
- 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?
- What interventions are most effective in supporting young people when returning to education or work?
- How can parents/carers/siblings/partners be best supported following the death of a young person with cancer?
- What is the best method of follow-up and timing which causes the least psychological and physical harm, while ensuring relapse/complications are detected early?
- What targeted treatments are effective and have fewer short and long term side-effects?
