Teenagers and young adults - the orphans of the cancer world
London, UK: Adolescent and young adult cancer is the new frontier in oncology, according to leading US cancer specialist Professor Archie Bleyer.
He told a news briefing today (Monday 1 March) at the Teenage Cancer Trust's Third International Conference on Adolescent Oncology, that survival among younger and older people had now surpassed that of teens and young adults.
"Adolescents and young adults have fallen behind orphaned in the world of cancer care delivery," he said.
The failure to improve survival among 15 to 29-year-olds over the last quarter of a century was striking, especially relative to the 39-46% increase in 5-year survival of children and young adolescents. "The reasons vary from country to country, but they are more similar than different."
Professor Bleyer, who is Director of the Community Clinical Oncology Programme at the University of Texas MD Anderson Cancer Centre in Houston, outlined some of the causes:
Psychological and social factors meant patients may be at a higher risk for delayed diagnosis and this may impact on survival. One study found that for all solid tumours except Hodgkin's disease, as age increased lag time increased.
Adolescents and young adults feel they are invincible and tended to give poor information, especially to doctors untrained in reading between the lines. " Some of the most advanced diseases occur in adolescents. We have older adolescents with extraordinarily large masses of the breast, testes, abdomen, pelvis and extremities that they've harboured for months because they were too embarrassed to bring the problem to anyone's attention," he said.
Too few young adults receive routine medical care. In the US, young adults and older adolescents had the lowest rate of primary care use of any age group. Also in the US, young adults were the least insured and the most under-insured. Nearly half lose their parents' healthcare insurance and don't acquire adequate cover afterwards. This age group lacked a usual source of care. Without a primary physician who knows the patient's health symptoms could be missed. "The transition from adequate paediatric to adult healthcare is filled with holes and inconsistencies," said Professor Bleyer. Physicians are poorly trained (or unwilling) to care for adolescents Adolescents and young adults aren't 'supposed' to have cancer so doctors don't suspect it and often attribute symptoms to physical exertion, fatigue, trauma and stress.
One important factor was that the spectrum of cancers among adolescents and young adults is different from any other age.
"There is no discipline in medicine devoted to this group. Neither paediatric oncologists nor oncologists who are for adults are trained certainly not optimally for this set of diseases," said Professor Bleyer.
Even the diseases that seem the same often have biological differences. Adolescents have different forms of leukaemia than younger or older patients. Acute leukaemia, for example, changers dramatically after the age of 10-12 and breast cancer before the age of 30-40 is different than in older women.
But, the clinching factor for these cancer 'orphans' according to Professor Bleyer, is lack of participation in clinical trials. "If we are going to address the survival deficit it requires broad support to increase clinical trial participation among 15 to 29 year-olds which, in the US, is under 1% and drastically lower than the approximately 60% rate in younger patients and the 3-5% in older patients."
"Worldwide, we need a new discipline in adolescent and young adult oncology. This age group deserves trained care providers, specialised clinics and inpatient units, and probably most importantly, dedicated research strategies that are not available with either paediatric or adult care programmes.
"Until we devote resources specially to this age group, there will be little progress. In the US it is difficult to show that, over all cancer, 15 to 30 year olds are better off today than they were a quarter of a century ago."
Professor Bleyer said he was delighted that the Teenage Cancer Trust was one of the leading organisations in the attack on what was universal problem, not only for those diagnosed with cancer during their adolescence and young adult years but also for those trying to traverse that age interval after being diagnosed earlier in life.
Source: Eurekalert & othersLast reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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Men are not prisoners of fate, but only prisoners of their own minds.
-- Franklin D. Roosevelt