When teenager Nicole Agostino was diagnosed with Hodgkin’s lymphoma last year, the hospital where she was treated was full of children and coloring books.
“The people made me comfortable, but the environment was painted and set up and geared for younger children,” said Agostino, 19, whose cancer is in remission.
Doctors say Agostino’s experience is common for teenagers with cancer, who often don’t fit into either pediatric or adult hospitals. Doctors at Children’s Hospital of Pittsburgh, where Agostino was treated, are following the lead of a handful of hospitals across the country in establishing a program for adolescent and young adult cancer patients.
Doctors say teens and young adults sometimes lack insurance in a health care system traditionally divided into pediatrics and adults, or can be incorrectly referred to doctors who don’t understand their conditions.
Oregon Health and Science University announced plans last year for a similar center, and the National Childhood Cancer Foundation’s Children’s Oncology Group has established an Adolescents and Young Adults Committee.
The National Cancer Institute has partnered with the Lance Armstrong Foundation to review the issue, and plans to release its findings this summer.
Survival rates stagnating
Efforts to target teens came from the fact that survival rates for teens and young adults have remained stagnant even as they have improved for the very young and older adults.
Doctors say targeting patients between the age of 15 to about 29 is as much about marketing as medicine. According to the National Childhood Cancer Foundation, about 95 percent of cancer patients younger than 15 are seen by pediatric oncologists, compared to about 20 percent of 15- to 19-year-olds.
“We’re trying to increase the number of patients that we see in that age range because their diseases are our bread and butter,” said Dr. Peter Shaw, director of the Adolescent and Young Adult Oncology Program at Children’s Hospital of Pittsburgh.
Children and adults usually get different types of cancer, though there is some overlap, Shaw said. Leukemia is most common among children and adolescents, while cancers of the skin, lung and colon are more common in adults.
Shaw said children generally receive more intense chemotherapy than adults, in part because children’s bodies are usually in better condition.
Some young adults may not feel comfortable coming to a pediatric hospital unit decorated in primary colors and full of toys to keep little hands and minds busy, Shaw said.
His hospital plans to add video games and CDs appropriate for older children. A teen lounge is planned for a new hospital under construction.
Programs targeted to teens and young adults are about care, but also research. At Children’s Hospital, for example, doctors are looking at preserving sperm and harvesting eggs for patients who may someday want families but could experience fertility problems.
It’s an option that normally wouldn’t be available — or even discussed — at most pediatric hospitals.
Lauren Spiker, of Rochester, N.Y., started a foundation in her 19-year-old daughter’s name after she died of a rare bone marrow cancer in 1998. The Melissa’s Living Legacy Foundation has since partnered with the Children’s Oncology Group to bring attention to the care gap.
On the group’s Web site, teens can talk with peers who have cancer, get information about missing school or going back to school after being ill, and learn about hair loss and other physical challenges.
The site has audio and video and is written to appeal to teens with titles such as “Weird Body Issues” and “All Drugged Up.”
Spiker said she remembers what her daughter went through when being treated at both pediatric and adult hospitals. At the pediatric hospital, the only thing to read in the waiting room was “Highlights for Children,” while at the adult hospital, the average patient was 65 years old and dying, Spiker said.
“We got to see both health care systems and teens don’t fit neatly in either one of them,” Spiker said.