by Scott D. Siegel, PhD; and Darcy Burbage, RN, MSN, AOCN, CBCN
In the July 10 issue, the article “Deadline for Survivorship Care Plan Compliance Being Rethought” notes that the Commission on Cancer (CoC) is “revisiting the [survivorship care plan] requirement since many institutions have been having trouble complying.” Respectfully, in loyal opposition, we say it’s about time the CoC is giving this standard second thought. The OT piece highlighted the feasibility question: is it even possible to meet the requirements of this standard? As we will review below, it was foreseeable from the outset that this was an unattainable standard. But more important than the question of “Can we?” is the question of “Should we?” That is, even putting aside the very real challenges this standard imposes on cancer programs, do treatment summaries and care plans actually offer any real value? The evidence challenges the assumption that if we could just find a way to implement this standard, it would improve care for survivors.
First, to the feasibility question: how does a cancer program go about providing a “comprehensive care summary and follow-up plan” to all cancer patients completing treatment? The simple answer is to hire someone (or several people, depending on the number of patients being treated) to complete these documents and then review them with cancer survivors. This is typically too time-consuming a task to ask existing staff to handle. To put this in perspective, at our program we have a very experienced Advanced Oncology Certified Nurse in the role of “survivorship nurse navigator,” and it takes her (DB) on average 45 minutes to an hour to just complete a treatment summary/care plan for one patient (not reimbursable). Then it takes another 30 minutes to review the summary/care plan with the patient.
If our survivorship navigator only completed and reviewed summaries/care plans with our survivors, never taking a day off or even a break, never offering any other survivorship service, she could reach about 1,400 survivors per year. Our cancer program sees over 3,000 new cancer cases per year. While we are very fortunate to have a full-time position devoted to survivorship issues, something many other community programs are not able to fund, we are certainly not in a position to hire multiple survivorship navigators.
To get around the time and labor issues, some have suggested that cancer programs can rely on software to prepopulate treatment summary fields with data from the tumor registry or the electronic health record (EHR). Unfortunately tumor registries are often several months behind. But even if the tumor registry was “real-time,” it tracks things like whether a patient received chemotherapy (yes or no) and not the specific types of chemotherapy a patient received, thus falling short of the CoC standard requirements. Using software to pull data from EHRs is also not as straightforward as it might seem. Most cancer care in this country is delivered in the community setting where there is often a hybrid model of employed and private physician offices, typically with multiple EHRs. It is unusual for EHRs to talk well with one another, and treatment summary software has yet to overcome most of these hurdles. Because the software either does not exist or the computer programming necessary to make it all work would be prohibitively expensive, for most sites, treatment summaries/care plans must be completed manually—hence the compliance concerns.
Next let’s turn to the question of whether we should attempt to meet this standard, feasibility issues aside. The theory goes that treatment summaries/care plans will help bridge the gap between oncology and primary care. Oncologists cannot follow their patients forever; at some point survivors need to transition back to their PCP. If survivors just had this document, with all the treatments they received, and handed it to their other physicians, no one would be “lost in transition” anymore, to borrow from the Institute of Medicine (IOM) report.1
The flaw in this theory is that it sounds so intuitive no one really bothered to test it before mandating treatment summaries for all survivors. As it turns out, even with this document in hand, survey research has revealed that PCPs do not feel adequately trained to manage cancer survivors.2-4 The research also shows that medical oncologists don’t trust PCPs to follow their patients, which is why medical oncologists are so reluctant to discharge. And the survivors, too, say they would rather be followed by their medical oncologist.
A single document, no matter how comprehensive, does not make up for the fact that most PCPs did not receive training on survivorship care when they attended medical school. And to the concern that we don’t have enough medical oncologists to follow the ever-growing population of cancer survivors, we don’t have enough PCPs either.5 This is a serious problem, certainly, but not one that treatment summaries/care plans fix.
The other argument frequently offered in support of treatment summaries/care plans is that it “empowers” survivors. With treatment summaries, survivors will have more knowledge, and with knowledge comes power. In our practice, despite making it as pleasant as possible an experience for our survivors to review their treatment summary (we coordinate with other appointments, do not bill, and the survivorship navigator offers to discuss the treatment summary only after establishing a good rapport), two-thirds of our survivors decline the service.6
Far from feeling empowered, the feedback we typically receive is: “That’s too much right now,” “I have other worries,” “Can’t my doctors just talk about this with each other?” And to the point of having other worries, when we survey our survivors – and the research again supports our findings7,8 – they ask for help with things like returning to work, managing long-term side effects -- and perhaps most of all, managing their fear of recurrence. These are the very kinds of concerns our program seeks to address with our survivors, but our reach is limited by the time and resources we must devote to treatment summaries/care plans.
Somewhere along the way survivorship care became synonymous with treatment summaries/care plans. We find this unfortunate. And this is not what the IOM report recommended, by the way. Treatment summaries were but a small part of the overall approach to survivorship care the IOM report was advocating (and something that should be reimbursable at that, which currently is not). The other IOM recommendations included a greater focus on symptom and side-effect management and developing and testing new models of care for survivors.
The real harm is that by focusing exclusively on treatment summaries we divert precious resources away from the kinds of services survivors actually want and need so that we can complete a document that sounds good in theory. This is hardly evidence-based care. This is hardly survivor-centered care. And as people who consider themselves strong advocates for cancer survivors, we say it’s about time we rethought things.
1. Hewitt M, Greenfield S, Stovall E. (2005). From cancer patient to cancer survivor: Lost in transition. Washington, DC; National Academies Press.
2. Grunfield E, Julian J, Pond G, et al. (2011). Evaluating survivorship care plans: Results of a randomized, clinical trial of patients with breast cancer. Journal of Clinical Oncology 29:4755-4762.
3. McCabe M, Bhatia S, Oeffinger K, et al. (2013). American Society of Clinical Oncology statement: Achieving high-quality cancer survivorship care. Journal of Clinical Oncology 31, 631-640. doi: 10.1200/JCO.2012.46.6854.
4. Grunfield E, Earle C. (2010). The interface between primary and oncology specialty care: Treatment through survivorship. Journal of the National Cancer Institute Monographs 40, 25-30.
5. Klabunde C, Han P, Earle C, et al. (2013). Physician roles in the cancer related follow-up care of cancer survivors. Family Medicine 45, 463-474.
6. Burbage D, Siegel S (in review). Implementing the role of a survivorship nurse navigator in a community cancer center.
7. Miller L (2012). Sources of uncertainty in cancer survivorship. Journal of Cancer Survivorship 6, 431-440.
8. Ness S, Kokal J, Fee-Schroeder K, et al (2013). Concerns across the survivorship trajectory: Results from a survey of cancer survivors. Oncology Nursing Forum 40, 35-42.
Scott D. Siegel, PhD, a licensed psychologist, is Director of Psychosocial Oncology & Survivorship at the Helen F. Graham Cancer Center & Research Institute in the Christiana Care Health System. Darcy Burbage, RN, MSN, AOCN, CBCN, is Survivorship Nurse Navigator at the Helen F. Graham Cancer Center and Research Institute.