Cancer Survivorship Care Remains Lacking in Current Care Practices


For primary care to increase transformation efforts integrating survivorship services into routine care, survivorship must become a recognized clinical category.

Ellen B. Rubinstein, PhD, University of Michigan, lead author

Ellen B. Rubinstein, PhD, University of Michigan, lead author

Ellen Rubinstein, PhD

Primary care currently lacks appropriate comprehensive survivorship services for cancer survivors, and many clinicians do not recognize cancer survivorship as a distinct clinical category of care, according to a research study published in JAMA Internal Medicine.1

“One of our key findings was that cancer survivorship is not a meaningful clinical category to primary care clinicians,” said Ellen B. Rubinstein, PhD, a leading study investigator. “There are currently no agreed-upon definitions, diagnostic or billing codes, or feasible clinical management strategies.”

According to Dr. Rubinstein, addressing these current deficiencies in clinical practice “will be part of the remedy” toward identifying care practices that can be implemented for cancer survivors.

The investigators compared 12 advanced primary care practices from a registry consisting of workforce innovators (n=151) that was obtained from the Robert Wood Johnson Foundation. Ethnographic data in each practice were collected over a 10- to 12-day period and included interviews of both practice staff as well as the “patient pathways” of cancer survivors who reported their experiences within the evaluated practice.

Practices were based in suburban (n=7), rural (n=2), urban (n=2), and small city (n=1) locations and consisted of a mix of physicians specialized in internal or family medicine. Of the 12 practices, 9 were identified as National Committee on Quality Assurance level 3 patient-centered medical centers, yet none of the practices offered comprehensive cancer survivorship services to patients.

Overall, there was a lack of a specific and recognized category of survivorship across all practices as well as an absence of an informed action plan to manage these patients. In response to the investigators’ questions, clinicians appeared to be unsure that cancer survivorship care was a clinically meaningful category that extended beyond the periodic assessment of recurrence.

Additionally, most clinicians reported becoming disengaged with patients’ care following referral to oncology.

This study did not examine the gap in clinicians’ knowledge or their current knowledge about survivorship care, which may have limited the findings. Investigators of this study agreed that future studies are required to see if similar findings can be observed in other clinical practices.

“At this point,” commented Benjamin F. Crabtree, PhD, “we don’t really know what information primary care clinicians need in their everyday workflow, or in what format.” He adds that many patients with a history of cancer often present with “multiple morbidities, and we need to figure out how care plans influence and are influenced by these other medical conditions.”

Jenna Howard, PhD, another investigator from this study, added, we don't have all the answers just yet, as cancer survivorship is a complex issue. According to Dr. Howard, this study may be a starting point, as it identified a lack of clinical coherence in this area, and before proposing concrete interventions, more needs to be learned.

The researchers agreed that there is a substantial need for more primary care voices addressing the issue.

“Interprofessional collaboration will be essential for developing standardized clinical definitions, diagnostic and billing codes, workflows, and health information technology that is amenable to cancer survivorship care management,” concluded the investigators.


  1. Rubinstein EB, Miller WL, Hudson SV, et al. Cancer Survivorship Care in Advanced Primary Care Practices: A Qualitative Study of Challenges and Opportunities. JAMA Intern Med. 2017;177(12):1726-1732.

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