NCI's Palliative Care Working Group
"Patients should not have to choose between treatment with curative intent or comfort care," the Institute of Medicine stated in its 2001 report on palliative care in cancer treatment. "There is a need for both, in varying degrees, throughout the course of cancer, whether the eventual outcome is long-term survival or death." Following this with a series of 10 recommendations, the report called on NCI to play a prominent role in changing the practices and institutions that influence palliative care in the United States.
NCI's Palliative Care Working Group has risen to meet this challenge, with 17 members from offices across the institute working with allied agencies to understand how palliative care can be incorporated into routine cancer care, as well as identify areas where greater effort may be needed.
The group's progress and links to participating offices are outlined under the "Research and Funding" section for symptom management on Cancer.gov. The topics on this Web page include complementary and alternative medical practices, fertility preservation, mental health, and religious and spiritual support - notably, not limited to the context of end-of-life care, as palliative care is so frequently misunderstood to be.
Working group member Dr. Bryce Reeve reports that NCI is working with the Food and Drug Administration to develop a Patient-Reported Outcomes version of NCI's Common Terminology Criteria for Adverse Events (CTCAE), a system used to document adverse events during treatment. The Patient-Reported Outcomes version will capture patient-reported symptoms such as fatigue, pain, and nausea electronically and integrate these with the revised CTCAE to enhance safety monitoring in oncology trials.
Dr. Julia Rowland, who leads NCI's Office of Cancer Survivorship, notes that in 2008, her office promoted palliative care research and discussion at its biennial conference. Many of the talks that were given during the previous biennial conference were presented this year in a supplemental issue of the journal Cancer. Her office also hosted a free teleconference series, and more than 1,700 cancer survivors from nine countries called in to hear expert-led discussions of palliative care and other survivorship topics.
Robin Baldwin, editorial board content manager of NCI's Physician Data Query (PDQ) project, notes that the PDQ Supportive and Palliative Care Editorial Board has produced 25 summaries on palliative care issues. "Recently the board has added a new summary on pediatric supportive care," she says. "This summary looks at psychological adjustment to cancer treatment in the pediatric patient, and it will be expanded to include information on physical adjustment, cognitive development, and long-term survivorship."
Another benchmark for the working group in 2008 is the successful dissemination of "Education in Palliative and End-of-Life Care for Oncology" (EPEC-O) by NCI's Office of Communications and Education (OCE). This multimedia, train-the-trainer curriculum was developed by Northwestern University, with funding from NCI and the Lance Armstrong Foundation.
EPEC-O was recently adapted for Native American populations, explains OCE's Dr. Cheryl Arenella, "and 89 health providers working within the Indian Health Service (IHS) have been trained to date, returning to their base practice site to train their peers and initiate new palliative services." Additional partnerships with IHS for palliative care education are being explored, she notes.
Updated publications for patients and caregivers are also available. English and Spanish versions of NCI's Pain Control - Support for People with Cancer booklet now include information and common misunderstandings about pain control, medicine, and side effects; communicating with health providers about pain; and psychosocial issues that arise with pain. These booklets and other materials are available on Cancer.gov. Free copies can be ordered online or via the NCI Cancer Information Service's toll-free number, 1-800-4-CANCER.
The NCI Palliative Care Working Group is coordinated by Andrea Denicoff of NCI's Division of Cancer Treatment and Diagnosis.
For more information about the working group, contact her at firstname.lastname@example.org.
—Brittany Moya del Pino