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Penn study: Breast cancer survivors call for more 'survivorship care' from primary care physicians

January 21, 2009

Findings illustrate need for more coordinated care to protect long-term cancer survivors

(PHILADELPHIA) - As the nation's growing population of breast cancer survivors ages, many patients will likely develop common chronic illnesses like diabetes and heart disease, and they'll need specialized care to balance those problems with the late effects of cancer therapies they received. They'll also need screenings and advice about new strategies for preventing recurrences of their disease.

But many patients give low marks to the post-cancer care they receive from their primary care physicians, who generally serve as a patient's main health care provider after they're released from active treatment with their oncologists, according to a new study from the University of Pennsylvania's Abramson Cancer Center published in the Journal of Clinical Oncology.

"Getting primary care physicians involved in a comprehensive survivorship care plan is critical to delivering high quality, accessible care to diverse groups of cancer survivors," says Jun J. Mao, MD, MSCE, the lead author of the study and an assistant professor of Family Medicine and Community Health who leads integrative medicine efforts at Penn's Abramson Cancer Center. "Currently, however, lack of communication between oncologists and primary care physicians is felt by survivors to be a major limitation of our existing system, so treatment summaries or survivorship plans may serve as important tools to bridge the communication gap and improve care delivery by primary care physicians."

In a study of 300 breast cancer survivors cared for at the Abramson Cancer Center's Rowan Breast Center, the Penn researchers found that patients offered mixed reviews of the survivorship care they received from their primary care physicians. While most patients said they were happy with the general care, psychosocial support and health promotion information they received, they reported being less satisfied by their physicians' knowledge of late effects of cancer therapies and ways to treat symptoms related to their disease or its treatment. Only 28 percent of patients felt that their primary care physicians and oncologists communicated well together - a partnership that the Penn researchers say will be a key way to create survivorship plans in the future.

Most patients surveyed felt that educational interventions to strengthen survivorship care in the primary care setting would be valuable, with 72 percent saying they felt it was important to teach themselves in order to create a cohesive care plan with both types of doctors. Seventy percent of patients endorsed the idea of developing a primary care clinic specifically for breast cancer survivors - a group that is two million strong, the largest group of all cancer survivors in the United States.

Penn's "Living Well After Cancer" Program Offers Model for Primary Care Involvement in Survivorship

As a nationally recognized leader in the field of cancer survivorship, the Abramson Cancer Center is uniquely positioned to create models of survivorship care and tools to help cancer survivors of all kinds. Penn's Living Well After Cancer Program, for adult and childhood cancer survivors, is a LIVESTRONG Survivorship Center of Excellence. This designation, awarded by the Lance Armstrong Foundation, reflects excellence in clinical care, research and education. Within the Living Well After Cancer Program, the same nurse practitioners who care for patients during their diagnosis and treatment help them develop an individualized survivorship care plan at the end of their treatment that guides patients if and when they transition back to their primary care or specialty provider for follow-up care.

And through the Abramson Cancer Center's OncoLink (www.oncolink.org), the Internet's first multimedia cancer information resource, individual survivorship care plans are now available - in both English and Spanish -- to millions of cancer survivors worldwide. The Penn researchers say that expanding programs like these to more cancer patients may help boost their satisfaction with survivorship care delivered via primary care physicians.

"Our goal is to provide optimal care and guidance to patients from diagnosis through the post-treatment survivorship period. Providers at Penn recognize that cancer patients require specialized care even as they begin new lives as survivors," says study co-author Linda A. Jacobs, PhD, RN, Director of the Abramson Cancer Center's LIVESTRONG Survivorship Center of Excellence. "Developing treatment summaries and care plans for all patients at the end of cancer treatment will guide patients and providers in appropriate surveillance and follow-up care throughout their lives."

University of Pennsylvania School of Medicine