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, concludes a new study published in the journal BMJ Open. In the first study of its kind, involving researchers from the University of Surrey, young people, their friends and family and healthcare professionals identified; pressing research priorities for young people with cancer. Funded by charities Children with Cancer UK, CLIC Sargent and Teenage Cancer Trust; and in partnership with the James Lind Alliance, the study calls for funding to be urgently allocate.
But every day, seven young people aged 13 to 24 years old are told that they have cancer; and it is the leading cause of death from disease in people aged 15 to 24 years old. However, affected by a different range of cancers than adults; young people often need complex treatment and care to support the unique challenges they face at a time when their peers are leaving home and starting work or university.
Cancer to be diagnose
Whilst specialist care and support is provided by the NHS and charities; how best to ameliorate the wider emotional and longer-term impact of cancer on young people is not fully understood, especially from the perspective of the person diagnose; and their friends and family. A research group that included young people, and led by Susie Aldiss and Professor Faith Gibson from the University of Surrey; conducted a national consultation examining over 800 research questions submitted by young people; family and healthcare professionals to identify priority areas for future research.
Amy Callaghan, aged 27, first diagnose with melanoma in 2013 aged 19 whilst in her 2nd year at university; relapsing two years later. She has undergone surgery numerous times and in remission for the past five years. Amy received support from Teenage Cancer Trust throughout her treatment; accessing a Youth Support Co-ordinator and Clinical Nurse Specialist whenever she needed it.
Amy, a politics graduate who now works as an office manager at the Scottish Parliament; took part in the study to help identify research priorities that reflected the needs of young people. She commented: “I wanted to use my experiences to help other young people facing their own cancer diagnosis. I could not allow the time I spent being unwell to go to waste; I had to see something positive come from my diagnosis. It took time for my cancer diagnosed: because of my age my symptoms initially not taken seriously, and this delayed my referral to a specialist. The support I received from Teenage Cancer Trust was invaluable in helping me achieve my university degree.
Young people with cancer
“I found it really interesting to involved in the study. Being an advocate for young people with cancer is different to having actual lived experience; and 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. “However, 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.
Professor Faith Gibson said: “A diagnosis of cancer can have a devastating effect, but for young people it can be even more profound. Not only are they facing a potentially life-shortening disease but removed from everything they know; their friends, family, school life or university or workplace. But more research needs to be done to support the psychological and emotional wellbeing of young people, to help them cope with what they are facing and to minimize any long term distress.”