Primary care is not set up to meet the specific healthcare needs of cancer survivors, according to a study by researchers at Rutgers University.
The study illustrates how efforts to move the long-term care of cancer survivors out of cancer clinics, which have been ongoing for decades, have largely failed.
Of 12 advanced primary care centers chosen from a registry of workforce innovators that aim to “include diversity in policy context and organizational structure,” none had a comprehensive cancer survivorship care program, the study showed. Results were published in the journal JAMA Internal Medicine.
“This is troubling because these are highly innovative practices that have a national reputation,” Benjamin Crabtree, senior study author and a medical anthropologist, said in a press release.
“As more and more people survive cancer, there will not be enough oncologists to follow these patients and meet their health care needs,” added Crabtree, who is a professor in the Department of Family Medicine and Community Health at the Rutgers Robert Wood Johnson Medical School (RWJMS) and a member of the Rutgers Cancer Institute of New Jersey.
Currently, there are 15.5 million cancer survivors in the U.S. By 2026, the National Cancer Institute expects this number to reach 20.3 million.
While most of these patients are transferred to primary care practices, there is no evidence that they get their care adapted to their needs.
For the study, “Cancer Survivorship Care in Advanced Primary Care Practices — A Qualitative Study of Challenges and Opportunities,” researchers spent 10 to 12 days in each practice to collect data on how the clinic handled cancer survivors.
They interviewed healthcare staff, administrators, and patients, and spent hours observing work in the clinics. The work allowed them to reach a couple of disheartening conclusions.
“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.
The team also discovered that the type of electronic medical records used in primary care has a limited capacity to record the often extensive history of cancer patients. Physicians were also not provided with recommendations for specific follow-up care.
Equally alarming was the fact that medical records are sometimes lost during transfers between clinics, placing the responsibility of reporting the cancer history on patients.
The report also showed that primary care physicians appeared well aware of their shortcomings in the knowledge of cancer survivor care and the need to continuously stay updated on the changing information in cancer care.
“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.”
The information on what should be included has been known for a long time. More than a decade ago, the American Society of Clinical Oncology and the Institute of Medicine released the report, “From Cancer Patient to Cancer Survivor: Lost in Translation.”
In addition to pointing out the need for primary care physicians educated in the needs of cancer survivors, the report identified the necessary components of such care: monitoring patients for relapses, keeping an eye on the long-term side effects of radiation and chemotherapy, and managing patients’ mental well-being.
Only if the identified issues are corrected can comprehensive cancer survivorship services become an integral part of primary care, the researchers concluded.
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