Even advanced primary care practices are not providing comprehensive cancer survivorship care, with deficiencies in how cancer survivors are categorized, how they’re transitioned to primary care, and in the information systems used in their care, according to a new study published online September 25 in JAMA Internal Medicine.

The analysis came from data gathered by investigators at Rutgers Robert Wood Johnson Medical School, New Brunswick, N.J., who performed case studies on 12 advanced primary care centers across a variety of practice types and geographic settings. The centers were chosen using a national registry of “workforce innovators” compiled by the Robert Wood Johnson Foundation in 2011 and 2012. All but three of the centers were designated patient-centered medical homes (JAMA Intern Med. 2017. doi: 10.1001/jamainternmed.2017.4747).

“None of these practices had any comprehensive cancer survivorship services,” said lead author Ellen Rubinstein, PhD, who was at Rutgers at the time and is now at the department of family medicine at the University of Michigan, Ann Arbor. “Instead, survivors received care equivalent to that of nonsurvivors [patients who never had cancer].”

Researchers noted the tremendous importance of primary care to cancer survivors. Only about a third of cancer survivors continue to be seen by a cancer specialist 5 years after their diagnosis, but 75% are seen in primary care. The importance of preventive screening, surveillance for recurrence, interventions for long-term effects, and care coordination between specialty and primary care were noted in an Institute of Medicine report in 2006 .

Researchers found that the primary care clinicians don’t treat cancer survivors as a distinct population; they get limited information or follow-up guidance on cancer care; and information systems aren’t good at supporting survivorship care.

“Codifying survivorship as a distinct clinical category that belongs on problem lists with payment-linked – fee, value-based, or capitated – care services is a critical first step toward bringing comprehensive cancer survivorship services to primary care,” Dr. Rubinstein said.

Researchers described what they called “cancer exceptionalism,” in which a cancer diagnosis follows a different clinical norm and patients are referred to oncology and then become disengaged with primary care.

On transition of care, one primary care physician told an interviewer that it seems that patients’ cancer treatment “kind of happens in a black box” and that they feel “a little intimidated” in providing the needed follow-up care.

Another said that while a patient’s cancer history could be seen “at a glance” in old paper charts, their electronic health record requires searching multiple screens and “sometimes it’s a needle in a haystack.”

“Despite the push from national organizations to enhance cancer survivorship care capacity in primary care,” Dr. Rubinstein said, “findings from this study suggest that cancer survivorship care does not integrate easily into advanced primary care.”

The researchers reported no conflicts of interest.


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