Over the past 20 years, advances in cancer treatment have created a new challenge: How does medicine meet the needs of increasing numbers of patients who survive the disease? Thanks to earlier detection and more effective therapies, roughly 14 million cancer survivors are now living in the United States, with this population expected to reach 18 million by 2020.1
The challenges of survivorship were first spotlighted in the 2005 Institute of Medicine (IOM) report, From Cancer Patient to Cancer Survivor: Lost in Transition.2 The study estimated that 10 million cancer survivors were then alive in the United States; that number had tripled complex physical and psychosocial conditions. The study found primary care physicians (PCPs) seldom received explicit guidance from oncologists for survivors in remission and lacked evidence-based best practices.2
A 2012 report on survivorship published by the American Cancer Society (ACS)3 estimated 13.7 million Americans with a history of cancer were alive on January 1, 2012, and nearly 18 million will be alive January 1, 2022. Prostate cancer is the most common diagnosis for men; at 43% of all cancers for men it is almost 3 times as common as the next 2 diagnoses combined, which are colorectal (9%) and melanoma of the skin (7%). Similarly for women, breast cancer at 41% is more than twice as common as uterine corpus (8%) and colorectal (8%) cases combined.3
The 2012 ACS report concluded, “It is increasingly important to understand the unique medical and psychosocial needs of survivors and be aware of resources that can assist patients, caregivers, and health care providers in navigating the various phases of cancer survivorship.”1
“We are going from the Big C, that automatically killed people and we couldn’t do much about it, to cancer as a chronic disease or a disease we can cure. It is still scary, but it is not the automatic death sentence it once was,’’ said Crystal Denlinger, MD, an oncologist at Fox Chase Cancer Center in Philadelphia, Pennsylvania. Denlinger, who specializes in treating gastrointestinal cancers, chaired the National Comprehensive Cancer Network (NCCN) panel on survivorship guidelines and coauthored their publication in the Journal of the National Comprehensive Cancer Network in May 2013.4 A patient-friendly version now appears on the NCCN website.5
“We are getting better at what we are doing, but we were all focused on treating the cancer and not the fallout of the treatment,” she said.
Survivorship Demands a Plan
The NCCN guidelines for cancer survivorship planning and care are intended for both oncologists and PCPs treating cancer survivors. The algorithms in the guidelines make recommendations for addressing anxiety and depression, cognitive function, exercise, fatigue, immunizations and infections, pain, sexual function, and sleep disorders in patients who have survived breast cancer, chronic myelogenous leukemia (CML), colon cancer, Hodgkin lymphoma, melanoma, non-Hodgkin lymphomas, non-small cell lung cancer (NSCLC), prostate cancer in 30 years. About two-thirds, or more than 6 million people, were older than 65 years.2
A large percentage of survivors, particularly those who are older, suffer chronic conditions in addition to cancer. The IOM report detailed systemic shortcomings in coordinating the nation’s notoriously uncoordinated healthcare system to provide cancer care for aging patients with cancer, small cell lung cancer, and thyroid carcinoma.5 Denlinger said the guidelines will help care providers fulfill a crucial recommendation from the 2005 IOM report: each cancer patient should receive a “survivorship care plan” that includes diagnosis and content of followup visits, tips on maintaining a healthy lifestyle and preventing recurrent or new cancers, legal rights affecting employment and insurance, and the availability of psychological and support services.
“The survivorship care plan that delineates what is required for follow-up has gained a lot of traction,’’ she said. “A lot of people are struggling with how to put together these care plans when, for many patients, the information is scattered across multiple offices and multiple systems.’’
The Commission on Cancer, which certifies most US cancer care centers, has made survivorship care plans a certification requirement beginning in 2015.6 “A few decades ago, a patient surviving cancer 5 years was a success,but now people are surviving longer and longer,” said Sarah R. Arvey, PhD, director of Research and Evaluation at the LIVESTRONG Foundation in Austin, Texas. “Once treatment is completed, patients and the primary care physicians should receive a list of what happened to you in the hospital, and the known risks of those medicines and treatments. You need to walk out of there with a plan. With electronic medical records this will become easier.’’
LIVESTRONG has developed a survivorship care planning template that, along with templates from the American Society of Clinical Oncology (ASCO) and National Coalition for Cancer Survivorship, is recommended in the new survivorship care plan requirement.6
Linking Survivorship to Payment
Survivorship planning and care is rising as a priority, because the transition from a fee-for-service reimbursement system to an accountable care system demands increasing correlation between results and what gets paid for, said Bo Gamble, director of strategic practice initiatives for the Community Oncology Alliance (COA).
“Healthcare is the last industry without metrics to determine what is good care or not such good care,’’ Gamble said. “We’ve seen a mass exodus of oncologists from community practice to hospitals, mainly for reasons of reimbursement. Patients and their insurers are paying almost double for hospital care. We want to develop the measures to make valid comparisons and create some healthy competition to improve care.’’
In 2012, Gamble and COA launched the Oncology Medical Home Initiative to explore with medical providers and payers what constitutes quality cancer care. He reports a high level of agreement and strong commitment to developing survivorship as part of standard care. “We asked the question, ‘What do you need in cancer care?’ The answer from everybody is the best quality care at the least cost with a good survivorship program that includes quality of life,’’ Gamble said.
“Payers, providers, patients, everyone answered the same. The payers said—and this was profound—they don’t want to give the impression (they) are about withholding care.’’
In fact, when Gamble detailed COA’s effort to develop 19 standards of cancer on October 30, 2013, at the meeting Value-Based Oncology Management in Chicago, Illinois, he noted that payers were the first to ask that survivorship be included in the standards.
Ira Klein, MD, chief of staff to the chief medical officer for Aetna and active in the Oncology Medical Home Initiative, said survivorship programs will succeed by empowering patients with information they can both understand and apply, while providing metrics for evaluating the costs and benefits of various treatments.
“We are looking for where what makes the most sense financially is what’s best for the patient. We want to arrange things so we encourage health, because being healthiest is what is cheapest, and when we have illness we pay for what works and not just everything people do,’’ Klein said.
“As we move from the very individualistic model of health care to population health care, the people who pay for the service recognize continuity of care is important,’’ he continued. “Once cancer patients are in remission they need a navigator to help with selfmanagement, help organizing records of their treatment, access to information on how to improve their health, how to manage long-term side effects. Maybe anxiety and depression will be issues; they may still be obese; they may not exercise and still smoke.’’ Dexter Shurney, MD, is chief medical director for Cummins, Inc, a leading global corporation headquartered in Columbus, Indiana, designing, manufacturing, selling, and servicing diesel engines and related technology. The company’s healthcare system covers 110,000 people and is about equally divided between employees and their families, Shurney said. The company is lending its perspective to the Oncology Medical Home Initiative because it already follows that mode for coordinated primary and cardiac care.
“We have a lifestyle approach to primary and cardiac care that encourages wellness. We know foods that contribute to heart disease contribute to obesity and diabetes,’’ Shurney said. “We would expect the oncologists to have a lifestyle approach to survivorship, particularly making sure patients don’t get a second cancer or it is caught early if they do. Our population will include children, some very young who require long-term follow up, and employees who want to get back to work as much we want them back. “Once people are in remission, what are the lifestyle adoptions they need to make? That is the conversation we are looking to measure, to see if that haphappens,” he said. “We don’t want people discharged without looking at what they might be doing that contributed to their cancer.’’
Moving Mountains—of Data
Lack of information is not the obstacle to writing a survivorship care plan. The biggest barriers are logistical and institutional; they include the technical challenge of coordinating the specifics of patient treatment with established best practices and documented side effects of medicines and treatment, and then paying care providers for it. “There is no reimbursement for putting together a plan the patient can take away. ... Physicians aren’t paid for it, so it just doesn’t happen,’’ said Shelley Fuld Nasso, chief executive officer of the National Coalition for Cancer
Survivorship. “For this to be common practice, we have to compensate physicians for their time.’’
Avery, of LIVESTRONG, said it takes about 3 hours per patient to assemble their survivorship care plan. “How can you get this done and get reimbursed for it?’’ she asked. “We have tools, the jewel being our free patient navigation services. We can help cancer clinics meet the needs of survivors.”
Nasso pointed to Journey Forward, a project to integrate data from cancer registries to speed plan preparation for 2 audiences, the patient and the primary care physician (PCP) who will care for the survivor once the cancer is in remission. “We need the NCCN guidelines to reach primary care physicians who are treating cancer survivors, and we need patients to get something, understandable to them, that says, ‘This is what you are facing; these are the side effects you should expect; this is when you need to call us,’’’ Nasso said. “I think it will get easier to create survivorship care plans as electronic record keeping improves.’’
Care Without Cure
In 1959 the British Medical Journal published a study that found cancer patients did better when doctors told them the truth about their diagnosis.7 Today, cancer is not always the disease doctors sometimes hide from doomed patients, but, even with better results from oncology, it remains perhaps the most dreaded diagnosis. A new IOM report issued this year, Delivering High Quality Cancer Care: Charting a New Course for a System in Crisis,8 tempers optimism nurtured by increasingly effective treatments. The nation can anticipate 1.6 million new cancer cases annually with more than half striking people older than 65 years, with comorbidities common in this population. Treatment, already costly, is skyrocketing with each new therapy. The 2013 IOM report found that living with cancer is frequently grueling mentally, emotionally, and financially for patients and their families.8
Screening programs have led to more overdiagnosis than cures while encouraging overtreatment of patients faced with bewildering and scary choices.9 For all the progress, cancer will likely surpass heart disease as the nation’s leading cause of death this decade.10 “We are in a new payment environment that presents a great opportunity to raise the quality floor,’’ said Amy Berman, a senior program officer at the John A. Hartford Foundation. Her focus is on the health and healthcare of older adults, evaluating both the cost and effectiveness of care.
Berman has become her own best case study. Three years ago she was diagnosed with stage IV inflammatory breast cancer. The first oncologist she consulted recommended aggressive treatment including surgery, chemotherapy, and radiation that he conceded would not cure her. She declined, pursued palliative care, and remains at her job. During her keynote address in Baltimore, Maryland, at Patient-Centered Oncology Care 2013, sponsored by The American Journal of Managed Care, Berman told a rapt audience about visiting the Great Wall of China and staying active as an advocate for palliative care.
The NCCN survivorship guidelines are a good start, she said, toward a frank discussion about what outcomes survivors can expect in exchange for the misery and cost of cancer treatment. She cites research that found patients who received palliative care frequently had better outcomes with standard treatment than patients who did not.11
“People need an open conversation about the likely course of the disease,not just their diagnosis,’’ she said. “My prognosis, the likely course of my disease, is that about 11% of people live 5 years. What do I want my next couple of years to look like and feel like? A curative approach that doesn’t cure will take away time from my family, cause me pain, and put me in the hospital where I am exposed to other infection.
“I take medications with the least side effects to hold the cancer at bay and, 3 years out, I feel great, I’ve saved about $500,000 and I have a great life,” Berman said. “But if I hadn’t understood the likely course of this disease, I might have thrown everything at it.’’References
1. Siegel R, DeSantis C, Virgo K, et al. Cancer treatment and survivorship statistics, 2012. CA Cancer J Clin. 2012;62(4):220-241.
2. Institute of Medicine. From cancer patient to cancer survivor: lost in transition. http://www.iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx Published November 3, 2005. Accessed November 18, 2013.
3. American Cancer Society. Cancer Treatment and Survivorship Facts and Figures, 2012-13. Atlanta: ACS; 2012. http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-033876.pdf. Accessed November 2, 2013.
4. Ligibel JA, Denlinger CS. New NCCN guidelines for survivorship care. J Natl Compr Canc Netw. 2013;11(5 Suppl):640-644.
5. National Comprehensive Cancer Network. DFCI/NCCN Cancer Survivorship Information. http://www.nccn.org/professionals/survivorship/default.asp. Accessed December 2, 2013.
6. American College of Surgeons. Commission on Cancer, Cancer Program Standards 2012:Ensuring patient-centered care, continuum of care services. http://www.facs.org/cancer/coc/programstandards2012.pdf. Accessed November 24, 2013.
7. Aitken-Swan, J, Easson, EC. Reactions of cancer patients on being told their diagnosis. Br Med J. 1959;1(5124). Accessed November 20, 2013.
8. Levit L, Balogh E, Ganz, PA. Delivering high quality cancer care: charting a new course for a system in crisis, a report of the Institute of Medicine. Washington, DC: National Academies Press. http://www.nap.edu/catalog.php?record_id=18359. Published 2013. Accessed December 2, 2013.
9. Esserman LJ, Thompson IM, Reid B. Overdiagnosis and overtreatment in cancer: an opportunity for Improvement. JAMA. 2013;310(8):797-798.
10. Ganz, PA. Survivorship: adult cancer survivors. Prim Care. 2009;36(4):721-741. 11. Temel JS, Greer JA, Muzikansky A, et al. Palliative care for patients with metastatic non—small-cell lung cancer. N Engl J Med.soo 2010;363:733-742.