In 2005 the Institute of Medicine (IOM) recommended that primary care clinicians should be the leading providers of care for adult cancer survivors in the United States. The IOM report even described the specifics of such care.1 Happily, there are more survivors now since that report was published: on January 1, 2016, there were more than 15.5 million cancer survivors. By January 1, 2026, that number is projected to be more than 20 million.2 However, primary care practitioners seem reluctant to manage the care of patients who are long-term cancer survivors. But what seems like reluctance is actually the result of several factors, according to a multi-institutional group that examined the issue. The results of their investigation address the problem and offer solutions.3
For their investigation, the researchers performed a comparative case study of 12 US primary care practices located in Colorado, Illinois, Maine, Pennsylvania, New York, and Washington, between March 2015 and February 2017. Each practice included internal medicine or family practice clinicians. One of 4 investigators spent 10 to 12 days in each location observing, conducting interviews with practice staff and cancer survivors, and collecting data. Onsite researchers analyzed office documents, field notes, and transcripts as they searched for examples of comprehensive survivorship care provided by each practice. They looked for “cancer survivors’ experiences of care in each practice, and the practice’s comprehensive approach to survivorship care. This included favorable conditions and infrastructure, or the practice’s capacity to implement comprehensive survivorship care (eg, disease registries, care coordination, communication with specialists).”3
Barriers to Survivorship Care
Of the 12 practices the authors studied, they could not find one that provided services of any kind for cancer survivors. The care that each practice provided for cancer survivors was the same care provided for patients who were not survivors. What the investigators did find in all of the practices were 3 significant barriers to implementation of quality care for cancer survivors.
Unrecognized clinical category None of the clinicians viewed cancer survivors as different from other patients, so cancer survivors were not considered to be a special group requiring a separate category of care. Except for knowing that they had to watch for the recurrence of cancer in these patients, the practitioners were often unfamiliar with specifics of survivorship care.
Lack of actionable information Many patients did not arrive at the primary care practice with a detailed survivorship care plan. The clinicians found outdated and insufficiently detailed cancer histories and treatment recommendations, and they could not reach oncologists and other contacts from when the survivors had received their cancer treatment — which could have been many years prior.
Survivorship has no code Because as yet there is no diagnostic code for survivorship, the survivors were neither identified nor tracked separately from the other patients in the practices’ electronic health records (EHR). This meant that clinicians had difficulty identifying them as a group who needed specialized survivorship services or care plans as conditions and treatments changed. One clinician reported regretting that there was no efficient way to track the survivors to find out if any of them developed treatment sequelae or secondary cancers.3
In their report, the researchers suggest that correcting these barriers and codifying the clinical category of survivorship are important first steps to the adoption of treating the cancer survivor in primary care.
Change Is On the Way
The American Society of Clinical Oncology, the American Academy of Family Physicians, and the American College of Physicians collaborated on an annual symposium focusing on survivorship. The Cancer Survivorship Symposium: Advancing Care and Research was developed to encourage and support primary care and other subspecialty physicians who provide care to cancer survivors. Because uniform standards are not fully established, the symposium mission is to make a significant effort toward helping primary care clinicians understand the needs of survivors and develop comprehensive, coordinated care models to meet those needs. The symposium is scheduled for February 16-18, 2018, in Orlando, Florida. Additional information and registration links for this meeting is available at https://survivorsym.org.
1. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006.
2. Miller KD, Siegel RL, Lin CC, et al. Cancer treatment and survivorship statistics, 2016. CA Cancer J Clin. 2016;66(4):271-289.
3. Rubinstein EB, Miller WL, Hudson SV, et al. Cancer survivorship care in advanced primary care practices: a qualitative study of challenges and opportunities [published online September 25, 2017]. JAMA Intern Med. doi: 10.1001/jamainternmed.2017.4747