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Comprehensive cancer survivorship services lacking in primary care
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New data have demonstrated an absence of comprehensive care for cancer survivors integrated into primary care practices.
“Despite a decade of effort by national stakeholders to bring cancer survivorship to the forefront of primary care, there is little evidence to suggest that primary care has begun to integrate comprehensive services to manage the care of long-term cancer survivors,” Ellen B. Rubinstein, PhD, from the Rutgers Robert Wood Johnson Medical School, New Brunswick, N.J., and colleagues wrote in their study published in JAMA Internal Medicine.
Rubinstein and colleagues conducted a comparative case study of 12 advanced primary care practices in the United States to determine why comprehensive services targeting long-term cancer survivors have not been widely integrated into primary care. These practices were selected between March 2015 and February 2017 from a national registry of 151 workforce innovators.
The researchers selected diverse practices in regard to policy context and organizational structure. The practices also came from multiple states and had a combination of physicians trained in family or internal medicine. Most practices (nine out of 12) were recognized as National Committee on Quality Assurance level 3 patient-centered medical homes.
For each practice, the researchers collected ethnographic data, including interviews with practice personnel and patient pathways with cancer survivors, for 10 to 12 days. Participating practices were asked about barriers to care innovation, knowledge of survivorship care guidelines and how patients are referred to cancer care.
Comprehensive survivorship care included favorable conditions and infrastructure, as well as the implementation of disease registries, care coordination and communication with specialists. The researchers identified prominent themes within and across cases by analyzing fieldnotes, transcripts and practice documents.
Results showed that comprehensive cancer survivorship services of any kind were not provided by any of the practices. Rather, patients received care comparable to that of nonsurvivors. The researchers found three interdependent explanatory factors: a lack of a distinct clinical category of survivorship in primary care; the absence of accessible strategies to treat the population; and information systems incapable of supporting survivorship care.
“Comprehensive cancer survivorship care is not happening in advanced [patient-centered medical homes],” Rubinstein and colleagues concluded. “The absence of this care is from the lack of concrete solutions to needs that precede the development and implementation of models of care. ... By correcting [the three identified] deficiencies, comprehensive cancer survivorship services could more easily integrate into current primary care transformation efforts.”
In a related commentary, Emily S. Tonorezos, MD, MPH, from Memorial Sloan Kettering Cancer Center, New York, and Joseph Conigliaro, MD, MPH, from Northwell Health, Manhasset, N.Y., wrote that the findings by Rubinstein and colleagues offer great insight into primary care cancer survivorship and highlight opportunities for future research.
“Next steps in this work should include building cancer diagnosis and stage into a searchable field in the medical record, developing clinical decision aids that incorporate evidence-based follow-up guidelines at the point of care, and creating communication facilitators that allow for reimbursable and expedited exchanges between primary care and oncology clinicians,” Tonorezos and Conigliaro wrote.
“Rubenstein and colleagues have engaged innovative and high-quality methods to produce the first step in this process: describing the current primary care environment for cancer survivors,” they added. “Although there is still much that can be studied to understand the reasons for the observed breakdowns, it is not too early for testing creative and innovative approaches to enrich this care.” – by Alaina Tedesco
Disclosures: The researchers, Conigliaro and Tonorezos report no relevant financial disclosures.
Perspective
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Andrew E. Chapman, DO
Rubinstein and colleagues need to be commended for this important contribution to the literature that clearly outlines the current deficiencies in comprehensive cancer survivorship care provided in the primary care setting. I believe that this is a direct byproduct of the current fragmentation of care in the U.S. health care delivery system due in large part to a lack of a shared model of care between the PCP and the specialist. This shared model needs to begin at the time of diagnosis and continue through a defined period of survivorship.
A team based approach is critical to keeping all providers heavily engaged in the care process including the ongoing need for timely communication. Clear roles and responsibilities within the care process need to be established at the time of diagnosis and continuously refined throughout the trajectory of care extending through survivorship. As is mentioned in this paper, a cancer diagnosis became the primary focus of all the patient’s care for decades and these patients were “turned over” to the oncologist with little ongoing connection to the PCP. This is not an acceptable model for cancer care going forward.
Several other critical issues are now emerging with serious implications for population health management. We are ill equipped as a nation to support the rapidly expanding population of cancer survivors who often possess multiple chronic conditions leading to extremely complex care needs, according to findings by Shirley M. Bluethmann, PhD, MPH, and colleagues published in Cancer Epidemiology, Biomarkers and Prevention. This is particularly relevant in the geriatric oncology cancer survivors population and has led our team at the Sidney Kimmel Cancer Center at Thomas Jefferson University to describe the expansion of this group as part of the “Silver Oncologic Tsunami.” Additionally, it is quite clear that cancer treatments may have an impact on the quality of the patient’s survivorship as has been well documented in several papers published in NEJM from the Childhood Cancer Study Group at St. Jude’s Medical Center.
These issues again highlight the need for team based care to address clinical issues, and the need to monitor for recurrence or the development of new cancers. Linking the patient centered medical home and patient centered specialty practice, utilizing guidelines from the American Cancer Society, flagging patients in the EMR with a cancer diagnosis by creating a distinct billable clinical category, and defining roles and responsibilities with actionable items should go a long way towards bridging the gaps in our current system.
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