Despite lack of conclusive data, survivorship care plans remain an ‘important tool’
A successful transition from active cancer treatment to survivorship care requires some form of communication between the treating oncologist, primary care physician and cancer survivor.
Survivorship care plans — documents that list treatments and procedures received, expected adverse events and suggested screening intervals — are intended to provide a bridge between these providers and facilitate a seamless transition of care.
In 2012, the Commission on Cancer (CoC) announced it would require use of survivorship care plans for cancer center accreditation and released a timeline for centers to adopt this standard. But, after relaxing its targets for adoption several times, the CoC removed survivorship care plans as a requirement, effective this year; however, it continues to encourage their use.
Although helpful in theory, implementation of survivorship care plans has been a burden on providers, according to Ann H. Partridge, MD, MPH, founder and director of the Program for Young Women with Breast Cancer and director of the Adult Survivorship Program at Dana-Farber Cancer Institute.
“We tried to give everyone everything with these plans and it became too much work in the ways the plans were initially recommended,” she told HemOnc Today. “But, let’s not throw the baby out with the bathwater. These plans are an important tool that we should optimize for ideal delivery of survivorship care for our patients.”
The goal should be to deliver survivorship care recommendations with the option of tapping into resources from other areas of health care, she added.
“We need a happy medium where patients can get what they need, are directed properly to care and receive the right care at the right time with the right recommendations while ensuring that we are not overdoing it and breaking the back of the system and the clinicians who deliver this type of care,” she said.
HemOnc Today spoke with experts about the impetus behind the creation of survivorship care plans, the challenges associated with producing them, ways to incorporate these plans more effectively and efficiently, and the need for more definitive data on their true value.
Behind the plans
In 2006, the Institute of Medicine (IOM) published From Cancer Patient to Cancer Survivor: Lost in Transition, a report that suggested clinicians were not adequately transitioning patients with cancer from active treatment to survivorship follow-up care.
“However, little happened in the country in the years after the 2006 IOM report was published,” Lawrence N. Shulman, MD, deputy director for clinical services at Abramson Cancer Center of University of Pennsylvania, and chair of the CoC, told HemOnc Today. “There was not much concrete movement forward in changing the way we cared for our cancer survivors until 2012, when a group of us at the CoC decided to focus on cancer survivorship as an essential component of cancer care and introduced the survivorship standard for CoC accreditation that would become active in 2015. That gave programs a few years to get themselves together.”
The survivorship standard focused on the delivery of the survivorship care plan, defined as a summary of the treatment that the patient received and direction of their care moving forward, Shulman said. These plans were developed to promote care coordination, communication and record-keeping efficiency.
“We initially thought focus of the document was important because most of the programs were starting from scratch,” Shulman said. “From a mechanical standpoint, everything needed to be jotted down on paper so that it could be delivered to the patient. Patients had to be identified, and measurements were required to know the appropriate denominators and how many patients should receive a survivorship care plan.”
The initial CoC goal was to have accredited cancer centers provide survivorship care plans to 25% of eligible patients by the end of 2016, 50% of eligible patients by the end of 2017 and 75% by the end of 2018.
However, based on feedback from the centers, the CoC revised its targets and recommended that 50% of eligible patients receive survivorship care plans by the end of 2018. Last year, they removed the requirement altogether for 2020 accreditation.
“Each year, the programs needed to deliver a survivorship care plan to a greater percentage of patients treated with curative intent,” Shulman said. “Unfortunately, this turned out to be a significant challenge for many cancer programs.”
Cancer centers performed variably in delivering the care plans, Shulman said, with some struggling to meet the goals and others exceeding the targets.
“Although we originally wanted the number of patients receiving care plans to increase annually, we later decided to cap it at 50% because we did not think all cancer programs could deliver the survivorship care plans to more than half of their survivors,” he said. “On the one hand, many cancer programs told us this was still a goal that they were having trouble meeting, whereas many cancer survivors asked why we thought that only half of the cancer survivors should receive survivorship care plans.”
Although the CoC no longer requires survivorship care plans for accreditation, it has established a revised standard that took effect in January that requires a named coordinator of survivorship activities, a committee of key personnel to work with the coordinator, and a menu of available survivorship services for patients. Evaluation of services offered for accessibility and effectiveness also are required. Survivorship care plans are still recommended, and some cancer centers still may make their delivery a priority, Shulman said.
“It is unclear if we will see a drop in the use of these care plans now that the CoC no longer requires them,” Deborah K. Mayer, PhD, RN, AOCN, FAAN, director of cancer survivorship at UNC Lineberger Comprehensive Cancer Center, told HemOnc Today. “It would be unfortunate if this were the case.”
Although most cancer survivors find survivorship care plans useful, clinicians said there have been challenges with implementation, leading to their underuse.
In a review published in 2017, Birken and Mayer found that only an estimated 12% to 43% of providers in the U.S. implemented survivorship care plans.
Not only do the plans require a lot of time to create, but PCPs often feel they have insufficient knowledge to understand the information included in the document and of specific issues that cancer survivors face.
“Most of us agree that there is a lot of heterogeneity in the way that these plans are deployed, whether patients actually receive them and whether they are accompanied by counseling,” Partridge said.
Dulko and colleagues conducted a descriptive pilot study to examine the survivorship care plan process across two facilities in Vermont. The analysis included 17 oncology staff members who created and completed survivorship care plans, 39 PCPs of cancer survivors and 58 survivors of breast or colorectal cancer who participated in a telephone survey that inquired about their perception of these plans.
The study revealed time as a barrier for oncologists to obtain the required information to include in survivorship care plans. With a mean care plan preparation time of 53.9 minutes, providers cited the time it takes to read through and request medical records as obstacles, especially considering that many patients receive care in multiple outpatient and inpatient settings.
Further, 58% of PCPs reported a lack of knowledge of cancer survivor issues required to implement the recommendations in the plans and 49% reported receiving inadequate recommendations from oncologists.
Conversely, 83% of patients found the plan visits “very useful,” especially within 6 months of their diagnosis.
Dulko and colleagues concluded that incorporation of survivorship care plans into electronic health records could potentially facilitate patient identification and timely creation of these plans. In addition, they suggested that oncology nurse practitioners may be well-positioned to create and deliver the plans and to allow for a 3- to 6-month window for their creation.
Another challenge is determining the patient population that would be best served with these plans.
“If we provide care plans to a population that is already doing well and does not need counseling and/or who are not at high risk for falling through the cracks for any health outcome, then we are gilding the lily and are unlikely to improve patient outcomes,” Partridge added.
Maly and colleagues demonstrated how focusing on a group of low-income breast cancer survivors can improve adherence to survivorship care plans.
Researchers randomly assigned 107 women to an intervention group, which included survivorship care plans and a nurse counseling session, and 105 women to usual care.
Results showed greater physician implementation of recommended breast cancer survivorship care, such as treatment of depression and hot flashes, in the intervention group (P = .003). In addition, baseline scores for satisfaction with care and information appeared positively associated with physician implementation (P = .02).
“The researchers observed improvements in outcomes in a population that may be at increased risk for falling through the cracks with follow-up care or for undue distress because of communication issues,” Partridge said. “Clearly, there is some value in these care plans, but a care plan alone does not clearly improve outcomes. We need to carefully choose the populations that receive them.”
More data needed
Data are sparse on whether survivorship care plans lead to improvements in patient quality of life and outcomes.
“The problem is that we were trying to implement survivorship care plans without strong evidence that shows they make a difference, which has impacted their uptake,” Mayer said. “Although most experts say that survivorship care plans are a great idea, they are onerous to implement, and more research is needed to show that these care plans make a difference before fully investing in them.”
Mayer and colleagues sought to examine the strength of evidence that shows survivorship care plans have a positive impact on health outcomes and health care delivery for cancer survivors by conducting a systemic review of 11 nonrandomized and 13 randomized studies.
Results of the analysis, published in 2018 in Journal of Clinical Oncology, showed current research is insufficient in proving that care plans improve health outcomes. The randomized studies generally yielded nonsignificant findings, although a few significant improvements were seen in depressive symptoms, health worry, outlook on life, amount of information received and satisfaction with care. However, researchers noted these benefits were limited to single studies.
The impact of survivorship care plans is unlikely to be understood until there is greater consistency across studies that assess the plans and how they are delivered, according to researchers.
“This is a good example of ‘the cart was before the horse,’” Mayer said. “We should have piloted these plans, evaluated their impact and then rolled them out for larger audiences. This may have been more effective, but that time has passed.”
In another analysis, Hill and colleagues conducted a meta-analysis of eight articles to evaluate patient-reported outcomes and a systematic review of 50 articles to evaluate the impact of survivorship care plans on providers’ knowledge and provision of survivorship care.
The results showed no significant differences at 6 months between survivors who did and did not receive care plans in terms of self-reported cancer and survivorship knowledge, physical functioning and satisfaction with information given or self-efficacy. At 12 months, the two groups did not differ in terms of anxiety, cancer-specific distress, depression or satisfaction with follow-up care.
However, the researchers also found that implementation of survivorship care plans appeared feasible and improved providers’ knowledge of survivorship and late treatment effects.
Partridge said more data are not needed to determine the value of survivorship care plans.
“Did anybody ever conduct a randomized trial of the computer? No, they did not. We do not need to test everything because some things do not need to be tested,” she said. “We should continue to develop, use and figure out ways to help support cancer survivors and the providers caring for them to deliver optimum survivorship care. This may vary from patient to patient based on their preferences, disease and treatment exposures, but the recommendations should not vary from physician to physician, especially in diseases for which we have decent evidence on the recommendations.
“A care plan is a tool by which one can both deploy and communicate optimal recommendations for any given survivor tailored to their disease, treatment, age and other factors related to the patient,” she added.
Ultimately, care plans should be easier to implement and more effective, Mayer said.
“We need to consider when, where and how we educate the providers who are going through the survivorship care process,” Mayer added. “How do we keep the primary care provider engaged and involved in taking care of survivors? Survivorship care plans may or may not be the right solution. We will have to see.”
Survivorship care plan success
Despite these challenges and lack of conclusively positive data, some institutions have been successful in delivering survivorship care plans and have done so hand-in-hand with building a survivorship program, according to Shulman.
“Successful programs that have built a solid survivorship program behind the care plans ensure services are in place that cancer survivors need to optimize their quality of life and deal with complications from the disease or from their treatment,” he said.
The Adult Cancer Survivorship Program at Memorial Sloan Kettering Cancer Center has incorporated survivorship care plans effectively and efficiently.
“Staff feel as though this is an important document in terms of value to the patient and outside providers,” the program’s director, Stacie Corcoran, RN, MS, AOCNS, told HemOnc Today. “We have an incredibly high rate of survivorship care plan provision and this is a metric that we monitor closely. It is a built-in piece of the follow-up visit and an expectation.”
Having information automatically abstracted makes a huge difference in creating the plans, Corcoran added.
“We have improved our care plan template design and our medical record integration over the years, removing some of the manual aspects so that it is not as time-consuming to create as it once was,” she said. “Our process isn’t perfect, but we’ve gotten it to a better place and reduced the workload for providers. We are actively working on it to continue improving the document, making it as personalized and patient friendly as possible.”
This reduced workload means Corcoran and colleagues didn’t have to sacrifice elements of the care plans to make their development easier. Rather, they’ve been able to add more information to the plans, such as greater detail on long-term and late effects of certain treatment exposures, she said.
Advanced practice providers have become more proficient with survivorship care plan development when preparing for a new cancer survivor visit, Corcoran added.
“We know that the number of cancer survivors will continue to grow, as will demands on the oncology workforce,” she said. “We need more information to determine how to best prepare and support cancer survivors as they transition from active treatment to follow-up care. This is something that we at Memorial Sloan Kettering Cancer Center are committed to providing our patients, and survivorship care plans are a key component.”
Shulman agreed, adding that survivorship care plans are not valuable in isolation.
“Survivorship care plans are only valuable if they help to set a patient on an appropriate course with their clinician for robust survivorship care going forward,” he said. “For that to happen, there has to be an ongoing relationship between the providers caring for the patient and services behind the programs that support the needs of cancer survivors.”
Corcoran recommended that institutions look to others that have successfully implemented survivorship care plans for guidance.
“Although ASCO has disease-specific and general treatment summary care plan templates, which are very helpful, there are fewer and fewer templates available,” she said. “‘Journey Forward’ was one that existed when I moved into survivorship care, developed through the National Coalition for Cancer Survivorship, but they instead now offer a cancer survivorship checklist that advises patients to ask their provider for a survivorship care plan.
“The health care industry is not feeling as panicked about survivorship care plans now that the CoC no longer requires them to meet the revised version of the standard,” she added.
Impact on PCPs
Although survivorship care plans fall to the oncology teams to develop and distribute, ultimately it is the relationship between PCPs and their patients that stands to benefit — or not — from the plans.
Still, despite efforts by national stakeholders to bring cancer survivorship to the forefront of primary care, data suggest most PCPs have not integrated survivorship care plans into practice.
The reason for this is multifaceted, Kevin C. Oeffinger, MD, family physician, professor in the department of medicine and director of the Duke Cancer Institute Supportive Care and Survivorship Center at Duke University School of Medicine, told HemOnc Today.
“In the past, primary care physicians were the ones to diagnose cancers and refer patients to an oncologist, who then essentially absorbed the patient’s primary care needs,” Oeffinger said. “Years later, the patient was sent back to the primary care provider as a cancer survivor along with a 10-page document that was relatively uninterpretable by the primary care provider. We in primary care often refer to this as ‘the black hole.’ What happens is we win the battle of cancer but lose the battle of the patient.”
Rubenstein and colleagues conducted a comparative case study of 12 advanced primary care practices in the U.S. to better understand why primary care has not begun to integrate comprehensive cancer survivorship services.
The researchers reported three barriers to survivorship care in the primary care setting — clinicians do not treat survivors as a distinct population, clinicians receive limited information or follow-up guidance on patients’ cancer care, and current information systems are insufficient to support survivorship care.
“If a primary care provider does not know what to do with the information they are given in a survivorship care plan, then we have missed the boat,” Oeffinger said. “We focus much more on the piece of paper than we do the actual process, which comes at the risk of losing the process. Many of us have now recognized this and are trying to do a radical redesign of the whole process.”
It’s important that PCPs are involved in cancer treatment from the day of diagnosis so that when a patient’s treatment is completed, the transition back to primary care is seamless, Oeffinger added.
“Primary care providers are already seeing these patients for other aspects of their health and rather than having that ‘black hole,’ we have to have them involved from day 1, because it makes the transition of care much smoother,” he said.
PCPs also are often unfamiliar with appropriate cancer surveillance strategies and lack guidance.
For instance, Merkow and colleagues reviewed 41 national cancer surveillance guidelines across nine cancer types and found the recommendations were often nonspecific and inconsistent, with 83% including ambiguous recommendations. Further, various guidelines did not address the same surveillance modalities for the same disease and few surveillance modalities were recommended across the guidelines.
Oeffinger said PCPs are now advocating for a more responsive approach to survivorship care.
“Through the complexity of the survivorship care plan form, we have lost sight of the goal of the actual process,” he said. “We have an explicit role in managing cancer survivors’ needs and whatever comorbidities the patient may have moving forward.
“We are all on the same team and the oncologist should feel confident in knowing that someone on the team is paying attention to these comorbidities and that the patient’s whole outcome, not just their cancer outcome, is being taken care of,” he added – by Jennifer Southall
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For more information:
Stacie Corcoran, RN, MS, AOCNS, can be reached at Memorial Sloan Kettering Cancer Center, 1275 York Ave. New York, NY 10065; email: firstname.lastname@example.org.
Deborah K. Mayer, PhD, RN, AOCN, FAAN, can be reached at Lineberger Comprehensive Cancer Center, CB 7460, Chapel Hill, NC 27599; email: email@example.com.
Kevin C. Oeffinger, MD, can be reached at Duke University School of Medicine, 20 Duke Medicine Circle, Durham, NC 27710; email: firstname.lastname@example.org.
Ann H. Partridge, MD, MPH, can be reached at Dana-Farber Cancer Institute, 450 Brookline Ave., Boston, MA 02215; email: email@example.com.
Lawrence N. Shulman, MD, can be reached at Abramson Cancer Center at the University of Pennsylvania, 3400 Civic Center Blvd., 12th Floor, South Pavilion, Philadelphia PA 19104; email: firstname.lastname@example.org.