In Survivorship Care, Many Models for Communication and Value

More people than ever are surviving after treatment for cancer, with the number expected to rise 31% over a 10-year period to 22.2 million by 2030. That kind of increase is “a good problem to have,” but also presents challenges in care delivery, according to Lauren Wallner, PhD, MPH, an epidemiologist and assistant professor in the Department of Medicine at the University of Michigan.

Wallner outlined what the evidence says about survivorship in a session Wednesday that opened the 48th Annual Meeting and Cancer Center Business Summit, the first in-person meeting in 2 years for the Association of Community Cancer Centers, taking place in Washington, DC.

“There's an increasing number of physicians that are involved in survivorship care, which is resulting in poorly coordinated care for any patients,” Wallner said. Too many patients feel “lost in transition,” when they stop active treatment, she said, invoking the title of a well-known 2006 report from the Institute of Medicine on the issue.

“Our current approach to survivorship care in the United States now is no longer sustainable,” she said. “There are significant quality gaps in the delivery of survivorship care.” Surveillance can be less than optimal, especially in older patients, and disparities here are not just by racial and ethnic group but also by geography—with gaps between rural and urban patients.

What is needed, Wallner said, is a model that “maximizes quality, improves efficiencies, addresses these inequities, reduces costs and improves outcomes for patients. So obviously, this is no small task.”

Wallner discussed a review of 53 studies on survivorship, noting the caveats that much of the research on survivorship comes from outside the United States and many studies involve breast cancer. In some models, oncologists lead survivorship care, and in others, primary care physicians (PCPs) take the lead; still others have nurse-led models.

The good news? In general, the PCP-led models cost less with no differences in mortality. But the bad news is there’s not much evidence on how well these models work in advanced cancers. Plus, Wallner said, there’s always the unanswered question, “how are we paying for these models?”

“Now that you know that these models are comparable, and may improve some outcomes, how do we get them into practices?” she asked.

Oncologists and PCPs have different views on who is delivering survivorship care. One study found that half of PCPs said they were co-managing survivorship with oncologists, while 70% of the oncologists said they were doing it themselves.

But what do patients want? Wallner showed data from 5000 women that showed in general, women preferred PCPs for survivorship care and managing comorbidities, but when it came to cancer screening, they preferred the specialist.

PCPs prefer a shared model of care, but often do not feel adequately informed about a patient’s cancer treatment or their ability to refer to a specialist quickly when necessary.

More evidence on survivorship care is coming, Wallner said. One question is whether survivorship care should be risk-stratified, with those at high-risk for recurrence being managed differently than patients at lower risk. “There's a lot of innovation going on in this space,” she said. ”We have a lot of opportunity to think about how to best leverage our [electronic health records] to help shore up some of this communication and coordination and also telehealth services.”

“Finally, if you've been in reimbursement, how do we then pay for and reimburse the providers involved in this care?”

Managing comorbidities. John Hopkins’ Kimberly Peairs, MD, vice chair of ambulatory operations and associate professor of medicine, The Sidney Kimmel Comprehensive Cancer Center, found her path to survivorship care through her work in treating patients’ comorbidities.

“I am an internist—I have no formal oncology training,” Peairs explained. But 20 years ago, a breast cancer surgeon reached out to the internal medicine department and explained that so many of the patients had diabetes and hypertension—and this was not good.

“We started working closely on a shared care model,” she said. “And over time, we developed a relationship with the medical oncologists and the radiation oncologists as survivorship care really came to the forefront.”

After the Institute of Medicine reported on the need for this type of care, it opened the door for a more formal relationship. Peairs said, “if you build it, they will come.”

There was an early concern about not taking patients from providers in the community, and for standardizing assessment so that payers would take seriously the value component of the work.

Echoing Wallner, Peairs noted that patients have varying levels of risk. Some had elevated genetic risk, and some needed palliative care. There were also questions of how many patients to see—should oncologists make all the referrals, or should patients self-refer?

By 2019, the John Hopkins group published its first set of data on its survivorship program; most patients had been treated for breast cancer, and some had survived gastrointestinal cancer, based on referrals from one doctor. Patients were surveyed on their emotional needs, and this process revealed that many patients experienced fatigue, along with fear of cancer recurrence. But their medical needs were very similar to other patients.

“Hypertension, hyperlipidemia, diabetes—the bread and butter medicine was there, which is not surprising, because we wanted to address those comorbidities,” Peairs said.

The effort has benefited from an integrated EHR that allows the Hopkins clinic to easily track patients, as well as enhanced evaluation and management (E/M) codes that have improved reimbursement, she said.

What patients value. John Hennessy, MBA, CMPE, senior vice president and strategist, Valuate Health Consultancy, joined the question and answer session, where some questions focused on how much patients want to participate in survivorship programs—or even be called “survivors.” One question asked whether elaborate plans developed by the American Society of Clinical Oncology were ever used by practices.

Hennessy said that in his experience, “The term survivorship is an interesting term. We have many constituents in the Young Survival Coalition who don't want that label anymore.”

When the survivorship planning movement began, Hennessy said, the early focus was on surveillance, but for many patients, they want to focus on moving forward. “Over time, we had to scale it back and figure out what patients really wanted,” he said. For example, some would not come in for a survivorship appointment if the co-pay was $25.

“Part of personalized care is figure out how patients value these things,” he said. “I get the sense that we got very caught up in making plans and documenting things, and maybe not as focused on the values of the end user.”