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"In most cancer centers, and in good community practices, we do a pretty good job at the time of diagnosis informing a patient and their family what the diagnosis is, and what they'll need to do to get through treatment," Ganz says. "But patients often have no idea what to expect once they've finished their cancer treatment, and neither do the primary care providers on their t
“In most cancer centers, and in good community practices, we do a pretty good job at the time of diagnosis informing a patient and their family what the diagnosis is, and what they’ll need to do to get through treatment,” Ganz says. “But patients often have no idea what to expect once they’ve finished their cancer treatment, and neither do the primary care providers on their team.”
To address the issue, UCLA, WellPoint , Genentech, and the National Coalition for Cancer Survivorship (NCCS) recently launched Journey Forward, a pilot program in California, Colorado, Maine, Nevada, and New Hampshire to promote physician and patient understanding of the post-treatment effects of cancer.
FIXING A HOLE
Michael Belman, MD, MPH, medical director for Anthem Blue Cross, a WellPoint company, says that one of the biggest issues in healthcare delivery is the fragmentation and lack of coordination among primary care physicians and specialists. That fragmentation, he adds, is particularly noticeable in the oncology world. “Oncology is such a highly complex specialty, and primary care physicians feel in some cases a certain amount of insecurity dealing with these patients. In the absence of communication, it’s very difficult for primary care physicians to pick up and manage these patients with confidence.”
The challenge, says Ganz, is that there are approximately 12 million cancer survivors, and each year that number grows by about one million new diagnoses. “We need to find some way to make this [coordination of care] easier for docs to do.” That “way,” at least initially, may be the Survivorship Care Plan Builder, a kit that Journey Forward is distributing to healthcare providers and patients. These kits, which will initially focus on breast and colon cancer survivors, will explain the importance of follow-up care plans, offer tools for providers to generate these plans, and provide interactive tools for patients to participate in the process. The kits are also available for download on the Journey Forward Website, with the toolkit and the Survivorship Care Plan Builder. The Survivorship Care Plan Builder has several useful features, including utilities that make the preparation of the patient’s treatment summary and follow-up care plan quick and easy, such as a regimen library, body mass index calculator, and checklists that significantly reduce data entry. Oncologists also have the ability to customize patient care plans with their practice’s logo and are enabled to expand individual care plans with valuable resources, such as a directory of support services, a list of symptoms that patients and physicians should watch for, and information on late- and long-term effects of chemotherapy treatment. Further, since the Survivorship Care Plans produced by the tool reside on the individual practice’s computer, they can be modified, e-mailed, or printed, and are completely private. According to Jennifer Hausman, MPH, clinical research manager for Anthem Blue Cross, the intent of these plans is to keep everyone on the same page. She notes that although the plan is put together by the oncologist, “they then give a copy of the completed care plan to the primary care physician or physicians involved as well as the patient.”
A CHALLENGING JOURNEY
Susan Silver, senior director of communications and programs for NCCS, says the transition from cancer patient to cancer survivor is universally challenging. While patients are in treatment, they know who is watching over them and what they’re supposed to do from week to week. When treatment ends, however, they’re left wondering what’s next? “Cancer is a serious illness. And even when you’ve completed treatment, and in some cases have been told there is no evidence of disease, it’s very common and understandable for people to be concerned that they have special healthcare needs.”
Jason Zimmerman, a cancer survivor and advocate, is one of those people. Zimmerman was diagnosed at 6 months of age with neuroblastoma of the left neck. The tumor was surgically removed, he was treated with radiation, and had checkups every three to six months thereafter. At age 15, however, he was diagnosed with thyroid cancer. He received a thyroidectomy and more radiation, but six years later, just after graduating from college, a recurrence of the thyroid cancer was detected. Following more radiation, he was given a clean bill of health, and has been cancer-free for the last 11 years. But, it was a long, hard road.
“When you’re 15, you’re just trying to find yourself, so I was dealing with that, and then dealing with [the thyroid cancer],” Zimmerman recalls. “And then going back to school ... the way I felt was that people were looking at me differently and treating me differently. I just wanted to be a regular kid in high school like everybody else. And there was no information that you should look for a secondary cancer down the line, or look for any other physical issues that could be the result of treatment or surgery.”
Journey Forward’s survivorship care plan, Zimmerman says, is important because it keeps records and treatment summaries together. There’s a plan for checkups, and an idea of what patients should look for. “It gives you the idea that you’re being proactive in keeping an eye on your body, because the thoughts of recurrence are always there. Sometimes they’re in the back of my mind, but they’re ever-present,” he said.
WellPoint has mailed the kit to oncologists and distributed a patient version to breast and colorectal cancer survivors. Postcards are also being sent to primary care doctors serving WellPoint to keep them informed. “This is free, anybody can use it,” says Ganz. “And the care plan is flexible and can be tailored by the doctors as they choose.”
Ed Rabinowitz is a veteran healthcare journalist based in Bangor, PA.