MORE research is urgently needed to improve the mental health of young people during and after cancer treatment and improve their access to clinical trials, a new study published today concludes.
In the first study of its kind, involving young people themselves, their friends and family and healthcare professionals has identified urgent research priorities.
Funded by charities Children with Cancer, CLIC Sargent and Teenage Cancer Trust, and in partnership with the James Lind Alliance, the study calls for more money to be allocated.
The findings reinforce concerns over a gap in knowledge about the psychological and wider social effects of cancer on people aged between 13 and 24, and an urgent need to improve their access to clinical trials.
The study says young people are affected by a different range of cancers from adults and children and complex treatment and care is often needed to support their unique challenges, at a time when their peers are leaving home and starting work or university.
A research group examined more than 800 research questions submitted by young people, family and healthcare professionals in order to identify priority areas for future research. The top three concerned: psychological support; what interventions, including self-care, can reduce or reverse adverse short-term and long-term effects of cancer treatment; and what are the best strategies to improve access to clinical trials.
Amy Callaghan, 27, was first diagnosed with melanoma in 2013 during in her second year at university, relapsing two years later. She has undergone surgery numerous times and has been in remission for five years.
Callaghan, a politics graduate who works as an office manager at the Scottish Parliament, received support from Teenage Cancer Trust throughout her treatment and took part in the study. She said: “Much of the focus of teams supporting a young person can be on how best to treat their cancer.
“But a person’s life after treatment, as they start to rebuild their lives, pick up school or work and live with the long-term consequences of cancer, is when they really need support. That’s why ‘psychological support’ was identified as the number one priority by the young people who were involved.
“I hope these findings help focus attention on the need to invest in more research into young people with cancer, to bridge the gap in knowledge and improve outcomes for young people facing a cancer diagnosis.”
Sasha Daly of Teenage Cancer Trust said: “Cancer can have a long-term effect on a young person’s physical and
emotional wellbeing. This is especially the case beyond treatment, when many young people tell us they can feel abandoned.”
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