FCRP Policy Statement

Cancer and its treatment can be complex and confusing', placing a great burden on patients and their caregivers. When the family resides in a rural area, the complications often multiply. An innovative research project being conducted in Southwestern Michigan is addressing the needs of cancer patients in rural areas.

The Rural Partnership Linkage for Cancer Care" project provides continuing, supportive care to cancer patients in rural areas and their families. The project seeks to integrate local physicians, hospitals, and community agencies. Care is being enhanced by the presence, in the communities of Rural Cancer Care Clinics, staffed by Oncology Nurse Specialists. During the clinic's first year of operation, patients with a variety of cancer diagnoses were enrolled in the study. The patients. ranged in age from 36-92. Their diagnoses included leukemia, lymphoma, melanoma, multiple myeloma, breast, colorectal, lung, pancreatic, prostate, and stomach cancers. Three-fourths of these patients were diagnosed with cancer at a late stage where effective treatment may not be possible.

At the outset of the project, it had been anticipated that the nurses would primarily be dealing with symptoms and side effects from treatment. Instead, the nurses are assisting patients with many of the other problems associated -with cancer care in rural areas, including the following:

• Fragmentation: Patients may need to go to physicians in three or more counties to receive care. Oncologists are often located in a different cities than primary care physicians.
• Lack of support groups: Support groups for patients and families are often not available in rural areas.
• Difficulty accessing services: Families describe difficulty in getting information, equipment, supplies, medication, nutritional supplements, hospice, and other health care services. Although these services are often available, patients do not know how to access them. Often, many contacts and phone calls by the Rural Cancer Care Project nurses are required to obtain the needed services.
• Transportation difficulties: Patients receive cancer specific treatment at distant cancer centers. Often, family members cannot take a day off work to transport patients to and from treatment or the cost of transportation to do this over several months is too high for the family to bear. Volunteer drivers are often not available.
• Financial concerns: Many patients have no insurance or insurance which is inadequate to cover the costs of cancer care. Certain drugs or treatments, such as smoking cessation patches, are not available to patients on Medicaid. Numerous Medicaid eligible patients need assistance but are not enrolled. 'Me result is a high level of out-of-pocket costs among rural cancer patients and their families.

Policy Implications:

1. Continued efforts to encourage coordination and cooperation between the major urban cancer care centers and rural hospitals, physicians and community agencies are needed, including more innovative programs. Such programs would decrease fragmentation and result in better care, earlier detection of complications, and lower health care costs for the patients and the system.
2. The awareness of cancer-related issues in the community needs to be increased. This includes prevention and early detection programs, greater awareness of the resources which are available, more services in the community, and more volunteers and support groups. Community-wide efforts are needed to establish programs which will lead to the earlier detection of cancer, for example, screening programs to reach the poor and underinsured.
3. The eligibility criteria for entitlement programs need to be changed to increase access for the poor and undeserved so they have the same choices in cancer treatment and state of the art medication.
4. Health care reform is needed which increases the availability of adequate health insurance in rural areas, lowering the out-of-pocket costs of health care for rural cancer care patients and their families.

This research was supported by Grant No. 5R01 CA56338froin the National Cancer institute, 'Rural Partnership Linkage for Cancer Care, " Charles W. Given, PhD, Principal Investigator. The grant is a collaborative effort of the Michigan State University Colleges of Nursing and Human Medicine, Department of Family Practice, the Cancer Center at MSU, the West Michigan Cancer Center, and the MSU / Kalamazoo Center for Medical Studies.