Thursday 1st August 2019

UK

Young people on a Teenage Cancer Trust unit

More research is urgently needed to improve mental health among young people with cancer during and after their treatment, according to a new study released today. 

The new study is the first of its kind and has involved young people, their friends and family, and healthcare professionals in identifying ten urgent research priorities for young people with cancer. Funded by Teenage Cancer Trust, Children with Cancer and CLIC Sargent, and in partnership with the James Lind Alliance, the top three research questions identified were: 

  • What psychological support package improves psychological wellbeing, social functioning and mental health during and after treatment?
  • What interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment? 
  • What are the best strategies to improve access to clinical trials? 

Young people with cancer face a unique set of challenges. There is still a concerning gap in knowledge about the psychological and social impact of cancer on teenagers and young adults, while young people with cancer still struggle to access clinical trials. The study calls urgently for funding to address the ten research priorities in order to further tailor the psychological and mental health support offered to young people with cancer, to improve advice on managing the side effects of treatment, and to understand how to improve access to clinical trials. 

The research group for the study examined over 800 research questions submitted by young people, their families, and healthcare professionals to identify the future research priorities. Amy Callaghan was one of the young people involved in the research group. Now 27, she was first diagnosed with melanoma aged 19 and relapsed two years later. During her treatment, Amy was supported by our Youth Support Coordinator and Clinical Nurse Specialist

"I wanted to use my experiences to help other young people facing their own cancer diagnosis," said Amy. "I couldn't allow the time I spent unwell to go to waste."

"I found it really interesting to be involved in the study. Being an advocate for young people with cancer is different to having actual lived experience. It was fascinating to see the differences in opinion between healthcare professionals and young people who have had cancer on what should be research priorities."

Sasha Daly, Deputy Director of Policy & Influencing at Teenage Cancer Trust said, "Cancer can have a long-term effect on a young person's physical and emotional well being. This is especially the case beyond treatment, when many young people tell us that they can feel abandoned. Investing in research is critical to developing interventions and therapies that deliver better outcomes for young people with cancer." 

You can read the full report here.