Barriers to care include inability to track patients’ records, lack of survivorship training opportunities for clinicians

Seventy-five percent of cancer survivors are seen in primary care practices, but more must be done to meet their health care needs, says a new study. 

“There is nothing in the residency curriculum about cancer survivorship. There is also nothing in Continuing Medical Education courses. It’s just not there.”
– Benjamin Crabtree, Rutgers Robert Wood Johnson Medical School

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 a 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 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 health 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.

In addition to these issues, primary care physicians are concerned about their knowledge gaps in cancer care and the need to monitor changing information in oncology. “There is nothing in the residency curriculum about cancer survivorship,” Crabtree said. “There is also nothing in Continuing Medical Education courses. It’s just not there.”

Only by correcting these deficiencies, can comprehensive cancer survivorship services move to the forefront of primary care, the study states.

 “Seventy-five percent of survivors are seen in primary care,” the authors write, “demonstrating a reliance on primary care to address their needs; however, those needs are currently not being met.”

Other contributors to the paper include Ellen B. Rubinstein, Ph.D., formerly RWJMS and now with Department of Family Medicine, University of Michigan, Ann Arbor; Shawna V. Hudson, Ph.D.; Jenna Howard O’Malley, Ph.D.; Heather Sophia Lee, Ph.D.; Alicja Bator, MPH (Department of Family and Community Health, RWJMS);  William L. Miller, M.D., Lehigh Valley Health network, Allentown, Pennsylvania; and Jennifer Tsui, Ph.D., Rutgers Cancer Institute of New Jersey.