Darcy Burbage, RN, MSN, AOCN, CBCN
Oncology nurses are well aware of this reality, says survivorship nurse navigator Darcy Burbage, RN, MSN, AOCN, CBCN, but providing care to the nation’s survivors, who currently number 15.5 million, “is really everyone’s business.” Burbage, who has been an oncology nurse her entire career, was drawn to survivorship care after being inspired by the resilience she observed in her patients with breast cancer as they embraced the “new normal” of life after treatment.
And despite the uncertainty surrounding what, at the time, was expected to be a 1-year position to launch a survivorship program at the institution—the Helen F. Graham Cancer Center & Research Institute in Wilmington, Delaware—where she works, Burbage jumped at the opportunity. Now, more than 6 years later, she—and the program—are still going strong.
Quickly immersing herself in shaping the young program, Burbage soon discovered that, “There is not a one-size-fits-all program for survivorship ... We’re in a community cancer center, so our program looks much different than an academic one.” Each survivorship care program needs to be tailored to meet the needs of the populations it serves.
Burbage’s practice is embedded in the cancer center’s radiation oncology department, so she sees patients as they prepare to finish their radiotherapy, as well as patients referred to her by physicians and nurses with the independent medical and surgical oncology practices based at her institution. And, “Sometimes the patients just find me.”
She added that because she is the only provider at her cancer center focused solely on survivor care, she must focus first on patients who need intense services. To triage these patients, she uses the Patient Health Questionnaire (PHQ-4) to gauge psychological distress. During visits with those patients, she provides education on long-term and late treatment effects, conducts follow-up on psychosocial issues prevalent in survivors using the 11-item version of the City of Hope Quality of Life scale, and provides them with a survivorship care plan (SCP). Many good options exist for building SCPs, Burbage said, but she particularly likes the Journey Forward template that can be downloaded and customized to meet individual survivor needs; it also automatically updates as new information becomes available.
Typically, within 3 months of treatment completion, she sits down with the patient to review the personalized SCP and provides 2 copies; she advises that 1 stay in the patient's personal medical file and the other is for their primary care provider (PCP). However, she also faxes it to the patient’s PCP to make sure the SCP is received and doesn’t end up at the bottom of a pile of papers.
“I urge patients to advocate for themselves, and they need to have this plan at hand so it can be part of their conversation,” Burbage continued.
When she meets a patient for the first time, she wants that person to guide the discussion. “I say, ‘I have access to your chart, but I want to hear your story,’” Burbage explained. Then she follows with an assessment tool, including a quality-of-life survey, and asks the patient to prioritize his or her top 3 concerns.
“It’s a journey. Sometimes it’s 1 or 2 visits, sometimes it’s many more,” said Burbage. Above all, “it’s patient-driven and determined by what they need. Patients want to stay connected with their healthcare team.”
CANCER AS A CHRONIC DISEASE
Adding another complexity to the landscape of survivor care is that health issues often arise long after cancer treatment ends, and, observed Burbage, “It’s hard to identify a cause and effect a lot of time.”
“Perhaps they received doxorubicin for their breast cancer in their 40s, and now they’re in their 60s. Are they going to recall that it was 20 years ago? Did people tell them about the cardiotoxicities? Even if they’re seeing the same PCP—and many are not—is the PCP going to relate it to their treatment? Or would they think it’s related to normal effects of aging or family history?”
All this points to the importance of education, said Burbage, and not just for survivors and oncology practitioners, but for PCPs, too: What are the late effects survivors need to look out for? What symptoms and signs they should be telling us about? Burbage added that because cancer, for some, has become a chronic disease and many people are living with advanced disease or on adjuvant treatment for early-stage cancers, comprehensive survivor care calls for both a multi-and interdisciplinary focus.
FEAR OF RECURRENCE
• NCCN Distress Thermometer and Problem List for Patients
• Quality of Life Patient/Survivor Version (QOL-CSV)
• Journey Forward
Though cancer treatment has come a long way, survivors are likely to experience fear of recurrence. Burbage learned how big an issue this is for survivors when she started her career in nursing.
“I admit I was naïve. I would say, ‘You’ve finished treatment. How are you doing?’” thinking that was the end of the conversation,” Burbage recalled. She said she quickly realized there was much more to the conversation, and now, she just raises the topic: “I know you’re happy to be done, but a lot of people have concerns about how having cancer affects their relationships, returning to work, and/or they’re afraid it’s going to come back. How are you managing?”
“When I put it out there, people are so relieved—they just open up to you. Their families are excited they’re ‘done,’ having walked through this journey with them, but they really don’t know what it’s like, to come back for the follow-up exams and have that anxiety,” Burbage said.
As survivors get farther out from their active treatment, the cancer will not be at the forefront of their mind, “but it’s always going to be somewhere,” said Burbage, and she sees part of her role as providing the reassurance that help is out there if and when they need it. "We'll always be there," she assures patients. "We're not kicking you out to the curb—whether it's 2 weeks, 2 months, or 2 years."
In addition, although many treatment-related physical issues will improve over time, fear of recurrence is not the only psychosocial issue facing survivors, and Burbage would like to see more attention paid to these (Box). “There are a lot of issues survivors are dealing with right after treatment and beyond.”
THE VALUE PROPOSITION
The volume of survivors alone underscores the need for survivorship care. In its 4th annual “State of Cancer Care” report, the American Society of Clinical Oncology estimated that the number of cancer survivors is expected to grow by one-third over the next decade—from 15.5 million in 2016 to 20.3 million by 2026. Although there is no charge for the services Burbage provides, when survivors come back for other needed services that can be coded and charged, such as dietician or rehabilitation services, there are revenue opportunities for hospitals downstream.
• Body Image
• Survivor's guilt
• Anxiety and fear of recurrence
• Financial toxicity
• Fear of passing cancer on to their children
In fact, a key to the success of the survivorship program at her cancer center is buy-in from the top. “Our senior management staff really believes in the program,” said Burbage. Another critical driver for survivorship care is the Commission on Cancer’s Survivorship Care Plan Standard 3.3 requiring that patients who have completed active therapy receive a SCP, she added.
Ultimately, however, “Survivorship is about much more than that piece of paper," Burbage stresses. "It’s the conversation.”