James Lind Alliance Priority Setting Partnership for Teenage and Young Adult Cancer – final report now available

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.

For the first time ever, we have a list of unanswered research questions identified by young people, families, friends, partners and professionals as important. This will allow funders and researchers to identify areas where funds and research efforts are best directed.

Young people who had experienced cancer between the ages of 13 and 24, their families, friends, partners and healthcare professionals were invited to identify the questions about teenage and young adult (TYA) 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 rigorous process which involved merging similar questions, removing ‘out of scope’ questions and searching the literature for questions which were already answered or programs of research which were ongoing; respondents were then asked to prioritise 104 questions. The top 30 questions were then taken to a final face-to-face workshop with young people, parents and professionals.

The top research priority was, “What psychological support package improves psychological well-being, social functioning and mental health during and after treatment?” The questions identified as high priority covered  all parts of the cancer ‘pathway’ including: identifying the most effective treatments for young people, supporting families during and after treatment, supporting young people returning to education/employment, minimising the long-term effects of treatment, supporting young people whose cancer cannot be cured and supporting bereaved families and carers.

Critical to the exercise were the young people on our steering group who contributed to all parts of the process. Leila Hamrang one of our steering group members said:

“If you have been affected by cancer, whether that’s as a young person or have been involved in their care as a parent, carer or professional, you will know that there are a lot of unanswered question. As a survivor, my main priority is around long-term effects from cancer treatment and I’m glad that this question made it in the top 10. It has been a privilege to be involved in this project, I’m looking forward to seeing change within the TYA services whether that’s at the point of diagnosis, during treatment or survivorship.”

The final report for this project has now been published and is available at http://www.jla.nihr.ac.uk/priority-setting-partnerships/teenage-and-young-adult-cancer/

The TYA Cancer Priority Setting Partnership Coordinating Team: Susie Aldiss, Dr Lorna A Fern, Dr Bob Phillips, Professor Faith Gibson. Contact details: tyapsp@gmail.com