WASHINGTON– Establishing a cancer survivorship program can be rewarding for patients and physicians – and for the cancer center as well – according to representatives from large and small centers that have started such programs.
Cancer survivors are a large and growing population with long-term medical and psychosocial needs. The National Cancer Institute estimates that there are 11.7 million cancer survivors in the United States.
Under the NCI definition, "an individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life." In addition, the NCI calls attention to family members, friends, and caregivers who also feel the impact of survivorship.
M.D. Anderson: ‘Graduate’ Certificates
Survivorship programs should be an integral part of any cancer center, said Fran Zandstra, director of cancer survivorship program at the University of Texas M.D. Anderson Cancer Center in Houston. These programs should address the acute phase of illness; the intermediate phase, which includes monitoring and rehabilitation; and the long term, covering wellness and a patient’s reintegration into the world outside the health system, she said at the annual national meeting of the association of community cancer centers.
M.D. Anderson started its survivorship program in 2008, and now has specialized programs for stem cell transplants, head and neck cancers, and gynecologic, breast, thyroid and colorectal cancers. Next up will be lymphoma, said Ms. Zandstra.
This is no small undertaking. M.D. Anderson saw 100,000 patients in 2010. Of those, 32,000 were new patients and 19,000 were long-term survivors, she said. The organization also has 18,000 employees.
Getting physicians on board was not easy, at least initially, said Ms. Zandstra, who is also a registered nurse. She and the colleagues who helped build the program surveyed physicians to ask what they would want to see in terms of transitioning patients to a survivorship program.
Some physicians said that their patients would not want to leave them for care from another doctor, which is a valid concern, said Ms. Zandstra. To get past that, the program created a "graduate" certificate for patients who were transitioning out of oncology and into survivorship.
Survivors are tiered according to risk: Surgical patients are at the lowest risk for complications or relapse, and thus are considered "tier 1." Next are tier 2 patients, who are at risk of complications or a second malignancy after chemotherapy or radiation. Finally, tier 3 contains the highest-risk patients, who have metastatic disease or are deemed at risk for other reasons.
Each disease has an algorithm that clearly states the expectations for how a patient will make his or her way through the survivorship system, including the expected components of each visit, said Ms. Zandstra.
The data collected at every visit go into a care summary that’s called the "Passport Plan for Health." This 2-page document is available for patients through M.D. Anderson’s patient portal, and also to physicians through a Web portal specifically for physicians. The patients are also told to take a paper copy of the care summary to each physician visit, whether it’s at M.D. Anderson or elsewhere.
The cancer center is gauging the program’s success by measuring patient and physician satisfaction, the number of patients eligible for survivorship who are seen, how many are referred for appropriate surveillance, the types and number of services used (such as bone density scans), and the number of passports issued.
Sanford Health: ID Patient Needs
A center does not have to be as big as M.D. Anderson to build such a program, said Becky Ball, a registered nurse and clinical services manager at Sanford Oncology Cancer Clinic, which is part of Sanford Health in Sioux Falls, S.D., and serves an average of 1,400 new cancer patients each year, according to its Web site.
The Sanford staff began with a program in breast cancer. That cancer is a common starting point because the patients are motivated, and there are many survivors. According to the NCI, the most common cancer sites for survivors are female breast (22%), prostate (19%), colorectal (9%), and gynecologic (9%).
At Sanford, staff sought to identify needs from a patient perspective from the outset. One way they did that was by surveying patients during chemotherapy infusions, said Ms. Ball. The cancer center has also collaborated with community organizations to help identify areas of need, and a patient navigator from the American Cancer Society is on campus to help survivors find resources.
The survivorship program is designed to give patients a perception of control and progress; it also coordinates care among the various providers, and helps patients gain an understanding of the process of care, she said. Because Sanford is not a huge institution, it has to maximize its resources. One way it does that is by using midlevel providers to deliver care. Sanford has also strived to differentiate the survivorship visits from regular surveillance visits, said Ms. Ball.