Primary care medicine is currently not able to meet the health care needs of cancer survivors, despite a decade-long effort by the medical establishment to move long-term survivorship care out of the specialists' realm, according to a new Rutgers study.

The study, published recently in JAMA Internal Medicine, examined 12 advanced primary care practices selected from a national registry of workforce innovators. Not one had comprehensive survivorship care program in place.

"This is troubling because these are highly innovative practices that have a national reputation," said study co-author Benjamin Crabtree, a medical anthropologist who is a professor in the Department of Family Medicine and Community Health, Rutgers Robert Wood Johnson Medical School (RWJMS) and a member of the Rutgers Cancer Institute of New Jersey. "As more and more people survive cancer, there will not be enough oncologists to follow these patients and meet their health care needs."

According to the National Cancer Institute, there are 15.5 million cancer survivors in the United States, a number expected to increase by 31 percent to 20.3 million, by 2026. The vast majority of these patients are seen in primary care practices.

A decade ago the Institute of Medicine released a seminal report, From Cancer Patient to Survivor: Lost in Translation, outlining the need for well-informed primary care survivorship physicians and identifying the components of care. Survivorship care includes checking for cancer re-occurrence, monitoring long-term effects of radiation and chemotherapy treatment and assessing a patient's psychological well-being.

The researchers, who over nearly two years spent 10 to 12 days observing each of the practices (based in Colorado, Illinois, Maine, New York, Pennsylvania and Washington) and interviewing clinicians and administrators, identified several barriers to integrating survivorship care into primary medicine.

No distinct clinical category for clinicians to identify cancer survivors exists. "There is no diagnosis code for 'cancer survivor' that can be entered into the medical record, which is important if you want physicians to pay attention," Crabtree said.
Electronic medical records (EHR) used in primary care practices have limited capability to record information on patients' cancer history and clinicians are not provided with actionable recommendations for follow up care.
Medical records sometimes are lost as patients change clinicians over the years, leaving patients to report their cancer histories to their primary care doctors.

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