Among the more than 200 types of cancer are those called “forgotten” or “orphan” cancers, with fewer than 40,000 new cases each year. They present treatment challenges in community cancer centers.
Because of the low incidence of these diseases, such as chronic myeloid leukemia, acute promyelocytic leukemia, and multiple myeloma, many community oncologists have trouble keeping up with clinical data and would benefit from colleagues’ experience. Moreover, because nurses, social workers, and other providers see these diseases infrequently, more information would help provide better supportive care.
Whereas some patients with small-population cancers are referred to major academic centers, most are treated and followed in community-based care.
“Patients want to be at home,” said Wendy Mitsuyama, RN, MSN, MBA, Program Manager, Hematology/Hematologic Malignancies, Seattle Cancer Care Alliance. Last year, her organization received 341 requests for help from community oncologists.
ACCC Seeks to Expand Expertise
In 2010, the Association of Community Cancers Centers (ACCC) began its Improving Quality Care in Small-Population Cancers program, specifically in chronic myeloid leukemia, acute promyelocytic leukemia, and multiple myeloma. It is designed to take advantage of the expertise of ACCC member specialists who can disseminate effective clinical practices.
An advisory board was composed of a multidisciplinary team that provided guidance for the project, which has three components:
- Provider portal, an interactive website that provides clinical and practical information. It is the first step for ACCC member oncologists looking for information about how best to treat a patient with one of the three cancers.
- Effective practices, standards-based examples that focus on clinical, patient support, and program management.
- Community resource centers, providing access for ACCC members to virtual “experts in residence.”
Community resource centers allow providers who may see only a few patients with small-population cancers to keep up with necessary expertise—for instance, treatment guidelines, expected adverse events, supportive care, transplant eligibility, insurance reimbursement, and other financial matters.
“Information, experience, and best practices do exist for these less common cancers,” said ACCC President Virginia T. Vaitones, MSW, OSW-C. “The [community resource center] aspect of this project aims to make this knowledge accessible on demand to cancer care providers around the country so that patients with these diseases can have quality care and cutting-edge treatments, regardless of where they choose to be treated.”
In establishing the quality care program, ACCC surveyed cancer centers to determine the adequacy and effectiveness of their overall resources, specific clinical processes, and support services. Five programs were chosen to be community resource centers: John Theurer Cancer Center, Hackensack NJ; The Nebraska Medical Center, Omaha; Seattle Cancer Care Alliance; St. Vincent Hospitals and Health Care Center, Indianapolis; and Winship Cancer Institute, Atlanta.
Ms. Mitsuyama said that the Seattle center has always had a policy of community outreach. “We do a great deal of clinical and translational research and have a number of community programs. We also have a large mailing list for our newsletters and other informational material directed toward community oncologists.”
She explained that the center sends physicians to satellite clinics as far away as Wyoming, Alaska, Oregon, Montana, and Idaho. “We have particularly responsive doctors,” she said. “There’s a central phone number for referrals, and we’ve set up a phone tree so that people out in the community can get expert help quickly. Our physicians really care that patients in the community have what they need.”
How Community Resource Centers Help
There are fewer than 6,000 new cases of chronic myeloid leukemia each year. Slightly more men than women get it, and more than half the cases are diagnosed in people over age 65. There has been significant improvement in treatment; therefore most patients survive at least 5 years after diagnosis. Acute promyelocytic leukemia is a subtype of acute myeloid leukemia and accounts for only 5% to 10% of all cases of the latter disease. It is commonly diagnosed around 40 years of age. Multiple myeloma has about 8,000 new cases every year. Its treatment also is improving, so prevalence is increasing.
Julie M. Vose, MD, MBA, Professor of Internal Medicine and Chief of Hematology and Oncology at University of Nebraska Medical Center, said, “These patients are on treatment for the rest of their lives, so for many of them the problems of having a relatively rare type of cancer are compounded by living far from a treatment center, perhaps one that has little or no experience with their disease.”
The community resource center in Nebraska also provides resources for a wide geographic area: Iowa, Kansas, Missouri, and South Dakota in addition to its home state. Dr. Vose said that she and her colleagues can provide information about treatment, as well as educational resources, especially for all health-care professionals who offer oncology services.
“There are good treatment guidelines available, but some patients don’t fit the guidelines, so we discuss options on a case-by-case basis.” She added that there’s not much call for help with supportive care. “That’s mostly done locally.” She believes that the community resource center program is much needed and will be valuable if community oncologists use it.
ACCC’s research found that the most effective treatment of patients with small-population cancers is team-based, coordinated by case managers (navigators). Because people with these diseases are not cured but rather stabilized, they must be continuously monitored and their need for support services assessed throughout the course of the disease. Some community cancer programs do this well, but many don’t.
Community resource centers can help uninsured and underinsured patients obtain expensive treatment, check on clinic visit compliance, follow-up between visits to see if prescriptions have been filled, and establish policies or guidelines to ensure drug compliance.
Ms. Mitsuyama believes that the community resource center program in Seattle is successful for three major reasons:
- A high degree of experience and expertise in blood and marrow transplantation
- A world-class faculty
- A large portfolio of clinical trials
ACCC members can access information from any of the community resource centers by going to http://mynetwork.accc-cancer.org. ■
Disclosure: Ms. Mitsuyama, Ms. Vaitones, and Dr. Vose reported no potential conflicts of interest.
