Adolescents with cancer are often missing out on the specialist research, treatment and care enjoyed by younger patients, Cancer Research UK and the UK Children’s Cancer Study Group (UKCCSG) warn at a special press briefing.
Teenagers and young adults1 get a different spectrum of cancers than either children or older people and have unique emotional needs, but are falling through a gap in cancer services, leading experts from the two organisations argue.
They are calling for a major focus on the needs of teenagers and young adults with cancer, to address deficiencies in data collection in the age group, a shortfall in the number of young people entering clinical trials and a shortage of specialist treatment centres.
In 1977, the UKCCSG was formed to organise research and treatment for children with cancer and has been very successful at increasing survival rates. The UKCCSG – mainly funded by Cancer Research UK – maintains a national register of all children’s cancers and enrols a high proportion of patients into clinical trials within specialist paediatric centres.
But many adolescents and young adults do not enjoy these benefits, while survival rates in this age group have not improved as dramatically as in children.
There is no national register of cancers among older adolescents and young adults. Data collection above the age of 16 can be very patchy, with patients sometimes included on both children’s and adults’ registers and on other occasions omitted from both. There is also evidence of considerable regional differences in the length and quality of follow-up once treatment has ended. Some centres ensure everyone has regular check-ups for several years, but others do not routinely follow up their patients.
Cancer Research UK and the UKCCSG also consider that too few adolescents across the country are entering clinical trials – which are not only essential to improve future treatments, but also benefit all those taking part by providing specialist treatment and monitoring.
Lack of reliable data makes it difficult to quantify the problem, but doctors estimate that 40-60 per cent of patients aged 15-19 enter national leukaemia trials, compared with 75-90 per cent of children under 15. Referrals to UKCCSG centres also begin to drop as children enter their teens, from 85 per cent in under tens and 74 per cent of 10-12 year-olds to just 58 per cent among those aged 13-14.
Dr David Walker, Consultant Paediatric Oncologist at the Queen’s Medical Centre in Nottingham, and leading member of the UKCCSG, says: “Within specialist teenage cancer units the vast majority of patients are encouraged to enter clinical trials, but outside of these centres recruitment is a real problem, with a lot of young patients slipping through the net.
“Missing out on clinical trials not only harms research into adolescent cancers, but also denies patients the opportunity for the best quality specialist care.”
The UKCCSG is helping to address the problem by increasing its upper age limit for referrals to 21. But many experts increasingly believe it would make sense to group teenagers with young adults in the age range 15-24 for some cancer trials.
Cancer Research UK and the UKCCSG believe cancer services need extensive restructuring to focus on the needs of adolescent patients. They think the UK needs a national registry for patients between the ages of 15 and 24, long term monitoring of all young people with cancer, specialist clinical trials to improve survival within the age group and more teenage cancer units to provide specialist treatment and care. Dr Ian Gibson MP, Chair of the All Party Group on Cancer, will be putting down an Early Day Motion in support of their calls today.
Professor Robert Souhami, Cancer Research UK’s Director of Clinical and External Affairs and a pioneer of specialist teenage cancer treatment in the UK, says: “Our lives change greatly in adolescence and young adulthood and developing cancer at this time can cause major disruptions to education, social life, relationships and starting work. Treating cancers in this age group also presents a special challenge to doctors.
“For these reasons our patients need specialised care, including access to trials and social and educational support. At the moment, that kind of specialist care is not generally available across the UK.”
Teenage Cancer Trust is currently setting up the UK’s ninth specialist unit. Staff at the units specialise in cancers like osteosarcoma and Hodgkin’s disease, which are particularly common in the 15-24 age group.
The units serve teenagers’ educational needs and provide relaxed surroundings where they can congregate, listen to music, watch TV and use computers.
Simon Davies, Chief Executive Officer of Teenage Cancer Trust, says: “Our units are the only ones operating anywhere in the world, built specifically for teenagers. The concentration of medical expertise within these units brings advances in knowledge and it is anticipated that treatment on a Teenage Cancer Trust Unit can improve chances of recovery.”
Professor Souhami adds: “All major cancer centres should now have specialist facilities for looking after adolescents and young adults. Their care also needs to include long-term follow-up, since like younger children, late effects of treatment are likely to be an important concern, so we need to track the progress of patients and make sure their data is logged in a national registry.
- ‘Adolescent’ is taken to mean 15-19 and ‘young adult’ from 20-24.
In the UK, there are about 550 cancers diagnosed annually in people aged 15-19 and 850-900 in those aged 20-24. In children under 15, there are approximately 1450.
Where cancers occur both in childhood and in adolescence and young adulthood, survival is generally slightly higher in children.
Five-year survival in children under 15, diagnosed between 1990 and 1994, was 97 per cent for Hodgkin’s disease, 76 per cent for non-Hodgkin’s lymphoma (NHL), 81 per cent for acute lymphoblastic leukaemia (ALL), 53 per cent for acute myeloblastic leukaemia (AML) and 60 per cent for brain tumours.
For people aged 15-24, the equivalent survival rates were 88 per cent for Hodgkin’s disease, 71 per cent for NHL, 48 per cent for ALL, 45 per cent for AML and 62 per cent for brain tumours.