Survival rates suffer as teens and young adults’ needs are ignored says charity
London, UK: Teenagers and young adults have been neglected, ignored and 'defined out of existence' by the government and the NHS, the head of a UK cancer charity said today (1 March).
They suffer from late diagnosis, they are denied the chance to take part in clinical trials and they get shuttled between the vastly different specialities of child and adult oncology. Improvements in survival now lag behind those of children and older adults and young people face the ordeal of a life-threatening disease with little support or acknowledgement that they have any special needs.
Mrs Myrna Whiteson, chairman of Teenage Cancer Trust, told a news briefing at the Trust's Third International Conference on Cancer and the Adolescent that it was a sign of this age group's invisibility that because of the way data are broken down in official statistics no one knows with any certainty what the UK incidence and prevalence of cancer is in the 13 to 24 age group, though best estimates put incidence at upwards of 2,000 cases a year.
"It's a dreadful and unacceptable situation," she said. "Cancer is the most common cause of non-accidental death in teens and young adults in the UK. The Teenage Cancer Trust has been highlighting the problem for over 10 years. We have been spending millions of pounds building and equipping specialist teenage units, lobbying and generally trying to drag cancer services for teens and young adults into the 21st century. Yet successive governments have done nothing."
There was at last, she conceded, a hint of progress with the National Institute for Clinical Excellence (NICE) extending to adolescents their forthcoming guidelines for treating children. These are due to be issued next year.
"But progress is not fast enough, and it's not TCT that is causing the delay. It's a combination of factors, including government reluctance, lack of medical recognition of the age group and conservative and unimaginative hospital managements."
It is common in the UK, and in many other countries, for childhood cancer treatment to be generic while that for adults is site specific. The two systems do not mesh well and those on the cusp suffer as a result – a situation often exacerbated by lack of co-operation between adult and paediatric practitioners. "It's a glass wall that has to be smashed if our young people are to get the service they need and deserve," said Mrs Whiteson.
It is more urgent than ever to act, she said, because there are now more young people with cancer in the 15 to 24 age group than there are children with cancer. Some treated in childhood relapse in adolescence and many of the 60% of children cured need long-term follow up. It is likely that numbers in the 15 to 24 group will increase over the next decade due to growth in the teenage and young adult cohort compared to the expected increase in the child population.
Mrs Whiteson said that none of this seemed to have been sufficiently considered by the medical profession, hindering reorganisation of service delivery. Nor had the NHS made any infrastructure changes to care appropriately for young cancer patients.
"It is taking a charity – Teenage Cancer Trust – to show the way and inspire change. We have established eight specialist adolescent units in the UK and we have 12 more in the pipeline, each costing around £1 million. The UK, through TCT, is the only country in the world to have set up these units, although other countries – where provision for young cancer patients is just as dire – are now starting to follow suit."
The range of cancers affecting young people include childhood and adult cancers, and the biology of their tumours is often different. In a further pioneering move, TCT is to fund the world's first Chair in Adolescent Cancer, ploughing £250,000 annually over the next decade into research and treatment.
But, said Mrs Whiteson, government help was essential. TCT was not asking for money – it would continue to raise its own funds. What was needed was government endorsement. Health Trusts could take years to see the needs of the 13 to 24-year-olds as any sort of priority. There were hospitals which, after 10 years of discussions, were still deliberating and denying appropriate services to their young patients. Government endorsement would help to make Health Trusts take teenagers seriously, accelerate the development of TCT units and improve patients' quality of life and chances of recovery. "Is the government going to sit on its hands and watch while young cancer patients fall behind in the cancer lottery? There may have been some recent improvement overall in cancer death rates, but not necessarily for the group with whom we are concerned. The government must ask the National Cancer Director to insist Health Trusts say what provision they make for this age group and stipulate that Trusts meet their responsibilities. The government must also use its powers to compel the pharmaceutical industry to develop trials for young cancer patients."
She concluded: "The government has an obligation to support our efforts. It cannot ignore what TCT has achieved, and as a partnership we could do even better."
Teenagers and young adults –some of the ways they miss out – summary
The arbitrary age breakdown in national and international statistical databases [10-14, 15-19, 20-24] means it is difficult to assess accurately how many teenagers get cancer, so information to establish requirements and on which to base services is lacking….. Teenagers tend to suffer from late diagnosis – GPs often don't consider cancer as a diagnosis possibly because of its low profile; some of the more frequently occurring cancers in this age group are difficult to diagnose; teenagers themselves are unaware about their own health; parents are less involved in teenagers' personal health than that of younger children; there is no clear pathway for referral and those referred to paediatric or adult centres are subject to different treatment protocols….. Relatively few young adults are enlisted in clinical trials – compared to 75% of children; the pharmaceutical industry dominates this field and this age group in each country is proportionately too small to justify their involvement; some of the cancers are rare and do not inspire trials; hospital policies may exclude this group as too young or too old because of the way cancer provision is divided into paediatric or adult oncology; clinicians may see young people as non-compliant….. The variety of cancers in this age group includes both childhood and adult cancers – the way the system is divided into generic childhood cancers and site specific adult cancers does not fit this in-between group….. This age group has emotional and social needs that are different in many ways from those of adults or children – family issues are more complex in the transition from childhood to adulthood; the effect on fertility is a major and poignant consideration; relationships are crucial to teenagers and cancer isolates the young patient; education is vital for 16-18 year-olds yet is rarely provided in a hospital setting for this age group; being thrown from growing independence back into dependence upsets the family equilibrium; palliative care requires special expertise; there are long term effects on careers, the ability to get mortgages, insurance etc……
Source: Eurekalert & othersLast reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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