Providing Coordinated, Patient-Centered Survivorship Care
Lauren M. Green
The growing number of survivors of cancer in the United States today-nearly 14 million strong and rising-is indeed a cause for celebration.
Mary McCabe, RN, MN
The growing number of survivors of cancer in the United States today—nearly 14 million strong and rising—is indeed a cause for celebration. Yet with the survivor population projected to increase by more than 30% in the next decade, providers across the healthcare continuum face real and immediate challenges as they work to meet survivors’ needs when active cancer treatment ends.
This year has witnessed several leading cancer organizations issuing reports and guidelines underscoring the importance of survivorship care—continuing the national discourse inspired by the seminal 2005 report of the Institute of Medicine (IOM), Cancer Patient to Cancer Survivor: Lost in Transition.1 In a report released last month, Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, the IOM argued that “cancer care is often not as patient-centered, coordinated, or evidence-based as it could be,”2 a situation exacerbated by a trifecta of an aging population, the increasing costs and complexity of cancer care, and shortages in the healthcare workforce.
And, earlier this year, both the American Society of Clinical Oncology and the National Comprehensive Cancer Network (NCCN) weighed in with recommendations and guidelines for achieving high-quality cancer survivorship care.3,4 In its first-ever set of survivorship guidelines, the NCCN presented a framework to manage potential long-term and latent side effects of cancer and treatment, with a focus on eight major issues: anxiety and depression, cognitive function, exercise, fatigue, immunization and infections, pain, sexual function, and sleep disorders. Survivorship care planning also features prominently in the patient-centered standards developed by the American College of Surgeons Commission on Cancer (CoC).
Also in the mix are the impact of full implementation of the Affordable Care Act and other health system realignments stemming from the trend toward practice consolidation and smaller practices affiliating with larger cancer centers.
“There is a growing awareness and certainly an acknowledgment of the importance of survivorship as a formal period of care,” noted Mary McCabe, RN, MN. McCabe directs the Cancer Survivorship Initiative at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City, where she has been responsible for developing and implementing comprehensive programs for cancer survivors over the last 10 years. She also served as a member of the 2013 IOM report committee.
Not One Size Fits All
McCabe explained that at the beginning, her institution spent a lot of time thinking about who might be the most appropriate provider of survivorship care for patients treated for adult-onset cancers, and her steering committee concluded that the nurse practitioner (NP) is especially well-situated and trained for this role.
NPs and in some cases, physician assistants (PAs), currently lead tumor-specific clinics for survivors in such areas as bone marrow transplant, breast, colorectal, thoracic, and urologic cancers. Each clinic is designed to address such issues as screening and preven-tion of second cancers, monitoring for late- and long-term treatment effects, health promotion activities, and fostering communication with the patient’s primary care provider.
The clinics are not freestanding, but rather integrated alongside the patient’s original care team. “Over the last few years, we have been growing this model throughout the institution, and now take care of over 10,000 cancer survivors at the cancer center,” McCabe noted.
She acknowledges that given the size of MSKCC, this tumor-specific clinic model used there and at some other large cancer centers will not be feasible for smaller hospitals and practices where NPs and other practitioners will see cancer survivors with diverse diagnoses. Furthermore, in rural areas, research has shownthat meeting the care needs of the approximately 2.8 million rural cancer survivors can be especially challenging.5 All this will require additional skills and training on the part of clinicians across the care spectrum.
For newer and emerging survivorship care programs, many resources and models are available (Box). McCabe noted that at MSKCC, they have purposefully worked to set up their survivorship website so that it can be used as a resource for other healthcare professionals planning their own survivorship care programs. She also is a principal investigator (with Marcia Grant, RN, DNSc, professor and director of the Division of Nursing Research and Education at City of Hope in Duarte, California) on a 5-year grant from the National Cancer Institute to train nurses working with cancer survivors who are transitioning from active treatment to survivorship care via training workshops designed for nurses from all cancer healthcare settings, including private practice offices and small community cancer clinics.
In all this, reimbursement looms large. “Thinking about how we provide the most appropriate and efficient services to cancer survivors is one of the issues that we’ve been giving a lot of thought to,” said McCabe. Fortunately, not all cancer survivors need the intensive services that, for example, a bone marrow transplant patient might need, she explained. “We want to make sure that we take rather scarce resources and use them effectively.”
McCabe said that they are looking at risk-based approaches to care that factor in the types of services patients may need, based on their risks for recurrence and long- and late-term effects, to help guide the decision-making. “It used to be that we said all of our cancer patients need to stay with us for life. I think we have a better understanding of people’s risk of problems down the road and also their risk of recurrence,” she said.
- National Cancer Survivorship Resource Center http://goo.gl/GNKXDw
- National Coalition for Cancer Survivorship http://www.canceradvocacy.org/
- Journey Forward http://journeyforward.org
- STAR Program http://www.oncologyrehabpartners.com
- Survivorship Center at MSKCC http://www.mskcc.org/cancer-care/survivorship
- Association of Community Cancer Centers http://goo.gl/g1n1D3
She advocates a rehabilitation model approach that includes helping patients to leverage resources available in their own communities.
Whereas the physician visit is reimbursable, McCabe noted, it varies by state whether the NP- or PA-clinic model will be. Understanding the reimbursement landscape in their localities is something providers designing survivorship programs need to establish early on.
Despite the fact that MSKCC’s survivorship program is a relatively mature one, McCabe said that her institution still faces ongoing challenges associated with the changing landscape of healthcare. “We’ve been thinking about this for a long time,” she said, “and we’re at a point now where we’re increasingly interested in metrics: How do we evaluate what we’ve been doing? How do we know what has been really working or not?”
Providers and patients of course would like payers to reimburse for survivor care services. “We know that they are extremely important,” said McCabe, “not only for cancer, but for a whole set of diseases in terms of prevention and risk reduction.”
“I would like to think that over time, people are enlightened that preventing disease is better than treating disease.”
- Institute of Medicine. Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: National Academies Press; 2005. http://iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx. Accessed October 7, 2013.
- Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Washington, DC: National Academies Press; 2013.http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx. Accessed October 7, 2013.
- McCabe MS, Bhatia S, Oeffinger KC, et al. American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care. 2013;31(5):631-640.
- National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines: Survivorship. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#survivorship. Accessed October 7, 2013.
- Weaver KE, Palmer N, Lu L, Case LD, Geiger AM. Rural-urban differences in health behaviors and implications for health status among US cancer survivors. Cancer Causes Control. 2013;24(8):1481-1490.