Survivorship Programs Seek to Ease Transition Back to Primary Care

As a result of early detection and advances in treatment, there are more than 12 million cancer survivors in the United States today, and that number will continue to grow. While this is a cause for celebration, it also highlights the increasing need for programs to address the challenges survivors face and provide them with the best quality of life.

“There is an anticipatory distress that increases as patients near the end of their treatment, because now they’re not actively fighting their cancer by doing these treatments,” said Rachelle Portner, RN, BSN, BA. Portner is a survivorship nurse navigator at John Muir Cancer Institute in Walnut Creek, California, a community-based hospital with 2 campuses and 7 nurse navigators.

Both Portner and her copresenter, Debra Hesse, survivorship program coordinator at St. Mary’s Regional Cancer Center in Grand Junction, Colorado, are cancer survivors and have developed survivorship programs for their organizations. Although the programs are structured differently, they share a common goal: to improve the lives of cancer survivors.

A COMMUNITY-BASED HOSPITAL SYSTEM PROGRAM

Portner’s posttreatment experience made her aware of the lack of support for cancer survivors. “The word ‘survivorship’ didn’t even exist in a clinical setting at that time. So I had to figure out how to do this for myself,” she said. Portner approached the administration in the cancer institute and said “I want to start a survivor program, and you need that.” They concurred.

The pilot survivorship program Portner developed was influenced by 2 books, Patient to Cancer Survivor: Lost in Transition and Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Both of these reports resulted in the American College of Surgeons (ACoS) cancer program standards. The pilot allowed her to identify the best ways to address survivors’ needs, which she has incorporated into the current program along with the ACoS/Commission on Cancer standards for 2012.

John Muir Cancer Institute’s survivorship program comprises the following:
Goals and service:

• Acknowledge that the end of treatment can be a time of both physical and psychological challenges
• Develop a program to decrease psychological distress and address physical and practical side effects of treatment
• Support each patient in achieving the highest possible quality of life after treatment
• Program components:
• Distress screening and follow-up. The institute elected to use a modified version of the NCCN distress thermometer. Portner ex - plained that the “Distress Screening” title was modified when research showed that the word “distress” was viewed negatively by patients. It was replaced with “How Are You Doing Today?” According to Portner, radiation oncology nurses use the distress thermometer to screen patients when they first come into the clinic for their education simulation, and at the end of their treatment about 7 days before they’re finished. Patients whose screenings reveal clinical evidence of moderate or severe distress (level 4 or more on distress scale, as defined by NCCN guidelines) are evaluated by their oncology team (managing physician, nurse navigator, nurse, oncology social worker) and connected to the appropriate referral for care
• Quality-of-life assessment. “I use that quality-of-life assessment to populate all the information and interventions that go into that care plan,” said Portner, adding that she and the patient will spend as much time as is needed to go through each intervention
• Health promotion and wellness information. Available from the American Cancer Society
• Community outreach and education. Includes health fairs, screenings, and nursing survivorship education seminars

A RURAL COMMUNITY CANCER CENTER SURVIVORSHIP PROGRAM

St. Mary’s Regional Cancer Center is in Grand Junction, on the rural Western Slope of Colorado. In 2006, the hospital received a grant from the Lance Armstrong Foundation to establish and staff a cancer survivorship program in association with the LIVESTRONG Survivorship Center of Excellence Network. Five years prior, Debra Hesse was diagnosed with melanoma, which led her to become a volunteer in the Cancer Center. When the grant was received, Hesse became the survivorship program coordinator.

Hesse said that when she became the coordinator, survivorship was a new concept. “People didn’t know what survivorship was. I was always looking for the big boat that’s gone before me and kind of cleared the path so I didn’t have to reinvent the wheel, and it really wasn’t out there.” It took Hesse 5 years, patience, and the 47 volunteers she supervises to develop the program and establish the Survivor Resource Center.
St. Mary’s Regional Cancer Center core survivorship program components include:

• Cancer survivor resource center. Provides free educational books and pamphlets, online research assistance, and audiovisual resources in both English and Spanish that address the medical, emotional, and practical challenges faced by cancer survivors. Also, the center provides a computer with Internet access for patients, a “book exchange” shelf, and free hats and scarves for those who have lost their hair
• Support and education. Art therapy program, 10 support groups and classes, Canyons healing retreats
• Community outreach program. Health fairs, skin cancer screening, community education talks

St. Mary’s is working on transitioning into a nurse navigator model utilizing a distress scale to identify patients who are in need of additional services and are also working on the implementation of electronic medical records to include the data points of a treatment summary and care plan into their new software, according to Hesse. “We are trying to determine the best way to close the loop, so our patients can transition their care from their oncologist back to their primary care physician,” she said.