March 16, 2004
Institute seeks to develop program for adolescents and young adults
Karen Albritton, MD
Although we have one body, the practice of medicine is divided into specialties to care for different parts: cardiology for the heart, hematology for the blood. Similarly, health care at Dana-Farber and elsewhere falls into adult and pediatric camps.
In between is a group that a 25-year-old cancer survivor recently called the "lost generation" - adolescents and young adults who find themselves too old for the childlike approach of pediatrics, and too young to sit in a waiting area with patients in their 60s. Just as certain illnesses require multidisciplinary care, so do certain patients and diseases require a mix of adult and pediatric expertise.
To accommodate this group, the Institute is developing plans for a comprehensive program that will blend research about the biologic and psychosocial needs of patients aged 15 to 40 with age-appropriate clinical and support services, and offer opportunities for teaching and training. The project is being conceived as a joint venture with clinical partners Brigham and Women's Hospital and Children's Hospital Boston.
Stephen Sallan, MD
Dana-Farber Chief of Staff Stephen E. Sallan, MD, who proposed the idea, explains that such a program will make it possible to offer care based on the behavior of a particular disease, rather than a patient's age. "In terms of our approach to disease, the historic boundary between pediatric and adult care at age 18 doesn't make sense," says Sallan, who is a pediatric oncologist. "There are virtually no diseases that begin and end at 18." He points out that the prognosis for cancer patients aged 15 to 40 has not improved in 20 years, a fact he calls "disgraceful" and wants to correct.
Led by Karen Albritton, MD, a sarcoma specialist who became director of Adolescent and Young Adult Oncology at DFCI last September, the program will allow scientists to conduct clinical research that is unrestricted by age. "It's ironic that we are peeling out an age group to focus on, yet our hypothesis is that we should treat by disease, not age," she says.
Teens and young adults have been nearly invisible in research studies, Albritton explains, because "about 90 percent of pediatric oncology patients are under 15, and about 90 percent of adult oncology patients are over 40. Researchers tend to focus on the median, not the edges. Therefore, we know very little about the biology of cancer in 15- to 40-year-olds. We hope our program will allow scientists to study how cancer behaves in this age group."
After several months spent learning the landscape of care for adolescents and young adults at Dana-Farber and its partners, Albritton is developing a business plan for the new program.
Albritton was formerly chief of Clinical Affairs for the Sarcoma Service at the Huntsman Cancer Institute and Primary Children's Medical Center at the University of Utah. Board certified in both adult and pediatric oncology, she is used to transcending boundaries as she cares for sarcoma patients at Dana-Farber, Brigham and Women's, and Children's. She brings this philosophy to her plans for a new program here.
Psychosocial concerns
"Cancer is hard at any age, but for patients 15 to 40, it is an affront to their independence," Albritton says. "It's as if a bomb dropped into a busy life." Plans for work, school, having or raising children, or affording a home are derailed; fertility is a major concern. Finances at this age are complicated, too. Many young adults have no health insurance and once diagnosed with cancer may become uninsurable.
The program will also help solve some of the logistical problems inherent in a system that places patients in one camp or the other. For example, when 16-year-old Michael Besser developed testicular cancer, he was cared for in adult clinics and missed out on the support that the Jimmy Fund Clinic can offer a teenager. Similarly, when Hannah Green's leukemia relapsed at age 20, she was seen in the clinic and received a second stem cell transplant at Children's, even though she had to understand and sign all the consent forms as an adult.
Albritton, who is based in Population Sciences, cautions that the planned program will be a virtual center at first. "We already have the right resources here. We will just have to reconfigure them and develop better navigation tools for these patients. We don't have any plans to enroll them in a new 'camp'; rather, we hope to add value to where they are."
Once funding is secured, she envisions a multidisciplinary, full-service program that will advance the Institute's strategic plan to build collaboration among scientists, clinicians, patients, and families. Says Sallan: "We are uniquely positioned to do this exciting medicine."
