Teen gap in cancer care

McMaster University pediatric cancer specialist Dr. Ronald Barr says the teen gap in cancer care has been overlooked for far too long.

Statistics show that gains in survival rates for teenagers and young adults (age 15 - 29) with cancer are dismal when compared to those for youngsters and older adults with the disease.

"While there have been improvements in survival in children and older adults in recent decades there has been no such improvement in this age group in the past 25 years or so," said Barr, a professor of pediatrics of the Michael G. DeGroote School of Medicine at McMaster University and chief of hematology-oncology at McMaster Children's Hospital.

Barr, who is involved in local, national and international efforts to reverse this trend, is available for interviews to discuss this issue.

Barr is one of the editors of the recently released and first definitive document on the incidence, survival and mortality of 15 - 29 year-olds. Funded by the National Cancer Institute (NCI) in the United States, this monograph was a co-operative venture between the Children's Oncology Group (all 17 pediatric oncology centers in Canada and more than 200 American institutions) and the SEER (Survival Epidemiology and End Results) program.

Barr is a member of the NCI and Lance Armstrong Foundation's new Progress Review Group whose sole purpose is identifying and prioritizing the scientific, medical and psychosocial barriers facing adolescent and young adult (AYA) cancer patients. They plan to develop strategies to better the odds for this age group.

"The Lance Armstrong Foundation is very keen to advocate for young people with cancer and educate them in high schools, colleges and work places to the fact cancer can afflict people in their age group - and that when they get a lump they shouldn't say 'it's just a lump' but that it might be a form of cancer," Barr said.

Barr co-chairs the Working Group on AYA within the International Society for Pediatric Oncology which will soon publish proceedings from its first workshop on AYA adolescent and young adults with cancer. He is also one of the authors and editors of an upcoming book on this issue.

He said there are a variety of reasons why the outlook is so poor for this particular age group. Chief among them is the fact so few are participating in clinical trials - organized studies which test the value of various treatments, such as drugs or surgery in human beings. This lack of involvement correlates directly with their poor survival rates, he said.

Young people's feelings of invincibility, coupled with a lack of awareness about their cancer risk, are other factors. And often family physicians aren't suspicious enough of teenagers' symptoms, interpreting a lump in the neck as an infection or leg pain as an athletic injury or growing pains, which delays an accurate diagnosis.

Even more confusing, Barr said, is the fact that the types of cancer within the 15 - 29 age group occur at different frequencies across this age range, the most common types in teenagers being different from the most common types in young adults.