Teenage and Young Adult Cancer
About this PSP
Teenagers and young adults (TYA) aged 13 – 24 years old who develop a cancer, are said to inhabit a unique "no-man’s land" placed between the healthcare systems mainly centred around children (paediatric oncology) or adults.
The conditions that this group of young people develop are often different to those of adults or children. Their physical, psychological and social responses to these life-threatening diagnoses are different, and the outcomes from the same malignancies are distinct; in some settings they have poorer survival than somewhat older adults and in some settings better outcomes.
We know that TYA with cancer are less likely be involved in research than children, and that the specific aspects of the cancers they develop and the way common drugs are handled by their bodies is less well understood than for children or older adults.
To encourage more research, which is focussed on the priorities set by TYA with cancer, the clinicians that work with them and the academic teams that research these areas, three charities combined to fund a PSP. These were Teenage Cancer Trust, Children with Cancer UK and CLIC Sargent.
The PSP's initial survey opened at the beginning of October 2016.
See news from this PSP: October 2019.
In May 2020 An (.PDF) evaluation of young people’s involvement in the ‘Teenage and Young Adult Cancer’ James Lind Alliance Priority Setting Partnership (.PDF) was published by Kristina Staley, TwoCan Associates. The report talks about the steps that the PSP took to involve young people in the PSP Steering Group and the priority setting workshop and how the young people felt about being involved.
The Teenage and Young Adult Cancer PSP published its Top 10 in January 2018.
PSP website
Articles and publications
Impact after the Top 10
Key documents
The Top 10 Priorities
- 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 GP 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?
The remaining questions discussed at the workshop were (in no order of priority):
- 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?
Document downloads
For full details of all of the questions identified and the methods used to check them, please see the documents below.