It’s a stunning disparity: Sixty percent of children with cancer are in clinical trials, compared with only about 6 percent of adult cancer patients. That low level of engagement holds true for adults with other conditions, and participation rates fall even further among elderly, women and minority patients.
Why do adults sign up children for cancer trials, yet not pursue the latest research projects when they have cancer themselves? There are several reasons, according to a Perspective piece by epidemiologist Sherine Gabriel, M.D., chairwoman of the Patient-Centered Outcomes Research Institute’s Methodology Committee and the William J. and Charles H. Mayo Professor at Mayo Clinic; and Annetine Gelijns, Ph.D., of the Mount Sinai School of Medicine published this week in the New England Journal of Medicine. Among them:
_ Effective coordination of pediatric cancer research: 90 percent of U.S. children with cancer receive care in centers affiliated with the Children’s Oncology Group, an international clinical research group that includes more than 5,000 U.S. cancer specialists.
_ The frequent separation of medical practice and clinical research, with inadequate communication between the two.
_ Community physicians, who care for most U.S. patients, are often unaware of trials that might help their patients; screening patients, obtaining consent from them and pursuing insurance coverage of care costs associated with trials is expensive and time-consuming; and physicians often are inadequately reimbursed for such efforts.
Solutions include building regional and national research networks like the Children’s Oncology Group, connecting local physicians with academic centers; using social media to engage patient networks; involving advocacy and community groups; and adding participation in research as a measure of physician performance, rather than judging them solely on the number of patients seen and the number of tests and procedures performed; and adding a focus on improved health outcomes to the standards researchers are measured by, rather than just the grants won and articles published, the authors say.
The high participation of child cancer patients in clinical trials seems to be paying off, Dr. Gabriel and Dr. Gelijns note: Survival rates for childhood cancers have quadrupled over the past four decades and now top 80 percent.