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Reducing Disparities in Rural Advanced Cancer Patients and Caregivers

Marie A. Bakitas, DNSc, APRN, NP-C, AOCN, ACHPN, FAAN, Marie L. O’Koren Endowed Chair and Professor at the UAB School of Nursing was recently awarded an award from the American Cancer Society to conduct a 4 year study to learn the best way to bring palliative care services to patients and families, improve care, quality of life, and reduce the burden of cancer in the four communities, and develop a “Toolkit” that cancer centers can use in implementing this model across the country.

Palliative care focuses on providing patients with relief from the symptoms, pain, and stress of illness. Research studies show that when patients with incurable cancer receive palliative care concurrently with regular cancer treatment, they have a better quality of life, less symptoms and depression, and may live longer. As a result, the American Society of Clinical Oncology recommends “palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.” However, nearly 60 million US citizens live in rural areas where few palliative care services exist. In response, over the last decade Bakitas and her colleagues have developed Project ENABLE (Educate, Nurture, Advise, Before Life Ends), a phone-based palliative care intervention. In Project ENABLE, a specially trained nurse practitioner leads patients and their caregivers through a series of structured telephone sessions on topics such as problem solving, communication, and medical decision-making. The patients who underwent this intervention had a better quality of life, less depression, and lived longer than patients who received only regular cancer care.  

Given that advanced cancer patients in rural areas are less likely to benefit from palliative services due to limited access and suboptimal care, it is necessary to find innovative ways for cancer centers in these areas to provide palliative care to four communities representing rural geography and/or ethnic and racial diversity: Birmingham, AL, Grand Rapids, MI, Spartanburg, SC, and Bangor, ME.

In phase one of this project, Bakitas and her team will create a community-academic “Learning Collaborative” partnership to assess current palliative care practices to allow them to determine the necessary steps to enhance the integration of palliative care along with usual care.  They will also measure organizational/system implementation and patient/caregiver effectiveness outcomes, to understand the current care at each site. In phase two, within the “Learning Collaborative”, the team will train local providers to deliver the ENABLE model, tailored specifically to their communities. After implementation, Bakitas will again measure outcomes, with the research goal of determining the extent to which the cancer centers adopted and followed the model and its impact on patients, caregivers, and the organization.

The long-term goal is to transition this knowledge to other cancer centers. In so doing, Bakitas and her team hope to reduce the suffering of patients living with cancer nationwide.