London, UK: Cancer doctors across the UK and beyond need to make a concerted and coordinated effort to improve the treatment and care of young people with cancer, according to the UK's first Professor of Teenage and Young Adult Cancer.
Professor Tim Eden said: "Up until now, attempts to improve the treatment of these patients has been somewhat fragmented and uncoordinated. The same applies to research. This condemns teenage and young adult cancer patients to a lottery in which some will be treated well, but many may receive sub-standard treatment and care. In some cases this will make a difference to the chance of a cure."
He told a news briefing at the Teenage Cancer Trust's 4th International Conference on Teenage and Young Adult Cancer Medicine that there was an urgent need for paediatricians and oncologists treating adult patients to communicate with each other and work together to improve the care of all young patients.
"This is not happening enough at the moment. There are large sections of the medical community who are not engaging in the process of improving research, treatment and care for teenagers and young adults (TYAs). We all need to be involved in this, talking to each other and coordinating our efforts. Otherwise there will be little or no improvement in survival for this age group."
Professor Eden, who is based at the University of Manchester, the Christie Hospital and Central Manchester and Manchester Children's University Hospitals NHS Trust, told the conference that recently he had sent out a questionnaire to the chairs of the Disease Specific Sub-groups within the Cancer Network in Greater Manchester and the North West.
"We asked them whether they worked with children, and whether they also worked with teenagers and young adults, and if so, how the two age groups connected. Only about half replied, and many said that paediatricians should not be involved in treating young adults with cancer, even though many of the cancers that we see in the 13 to 24-year-olds are not necessarily adult cancers, but are often cancers specific to this age group.
"The survey underlined the fact that many cancer physicians and surgeons are so busy with a huge workload that the rarer teenage and young adult cancers do not really register or resonate with them. This is why it is so very important that some specialists do take a big interest and coordinate care for TYAs."
At present, TYA cancer patients in the UK can find themselves being treated either on a children's ward, surrounded by toys and story book murals, or in an adult ward with much older people – neither of which is appropriate. In the UK, a lucky few will be treated in one of the seven dedicated TCT units where they will be with other young people and will receive care and treatment appropriate for their age, delivered by doctors and nurses trained to meet the specific needs of TYA cancer patients.
Professor Eden said a concerted and coordinated effort was needed because there were still so many unanswered questions about TYA cancers and their best treatment. In addition, NHS structures and the education and training of doctors and nurses needed a radical overhaul in order to make an impact on TYA cancer.
"We need more work to identify which tumours are most likely to develop in teenagers and young adults, and why. We need a major research programme into the causes of cancer in this age group because there is a different pattern to that seen in childhood and in older people. Where we have not made progress in improving survival we need to find out why. For instance, there was an improvement in survival for TYA cancers in the 70s and 80s particularly; but for some cancers this has plateaued. There has been no improvement for bone cancers and soft tissue sarcomas, for example. Furthermore, where improvement in survival has occurred, it is seen much less in teenagers and young adults than in younger children.
"We need to explore why young people have a very low entry rate into clinical trials. Are doctors failing to enter them because they think they will not agree, or are young people voting with their feet and refusing to join trials? Anecdotal evidence to date suggests that principally it is doctors who don't enter them into trials and a questionnaire of 271 young cancer patients has shown that 50% of them were never asked if they'd like to participate in a trial. We need to define for each disease grouping if there is a clinical trial and if not, why not.
"We need to work on a programme of education and training of specialists with an interest in teenagers and young adults, and we need to educate young people, their family and carers, teachers and GPs about the signs and symptoms of cancer.
"If teenagers have worrying symptoms they tend to delay going to their GP, hoping the symptoms will disappear. Once they do go to their GP, the GP often may not recognise the symptoms and so there is a delay before they refer the patient to a specialist. When they do refer, it is not always to the right person or the right centre. So we need to educate young people, their families, carers and teachers, so that they realise that if a young person has persistent or worrying signs or symptoms, they should seek medical help. Even more importantly, we need to make sure that the medical profession is well educated as to the meaning of such signs and symptoms and do not fail their patients by delays in diagnosis.
"None of this can be achieved without a coordinated effort from the medical professions."
Professor Eden said that while much needs to be done to improve things, the UK was leading the way over the treatment of this age group, with seven specialist TCT units established and more planned. In addition, in August 2005 NICE (National Institute for Health and Clinical Excellence) had recommended that all under-19s should be treated in wards with services specially designed for them and access to age-appropriate resources was also recommended up to the age of 25.
"This is not a new area of research and activity unique to Britain, but the UK is, in many ways, a world-leader. However, there is still plenty of room for improvement and we must try harder to coordinate our efforts and to learn from each other."
Notes: Current initiatives to promote collaboration and further research into TYA cancers include: the National Cancer Research Institute (NCRI) TYA Clinical Studies Development Group under the chairmanship of Dr Jeremy Whelan, the TYAC group (Teenagers and Young Adults with Cancer), and the UK's first chair in Teenage and Young Adult Cancer held by Professor Tim Eden.
Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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