As more cancer survivors live longer, the challenges increase for those responsible for coordinating care among primary care providers, specialists, and oncologists. The concept of survivorship continues to evolve to include life long after cancer treatment, according to updated guidelines from the National Comprehensive Cancer Network.
Americans are living longer after a cancer diagnosis. Survivorship guidelines are now a well-recognized part of the cancer care landscape; CMS’ Oncology Care Model even requires that each Medicare beneficiary have a survivorship care plan.
That’s the good news.
But there’s bad news, too, according to a nurse and a primary care physician from the University of Colorado Cancer Center, who appeared at the 2019 annual meeting of the National Comprehensive Cancer Network (NCCN).
According to Carlin Callaway, DNP, RN, and Linda Overholser, MD, MPH, cancer survivors don’t always do what they’re told. About 50% don’t wear sunscreen as advised; 27% do not see a primary care provider (PCP) regularly. Rising numbers have obesity, metabolic syndrome, and other health issues. They don’t always eat healthy or exercise, even though this would increase their chances of survival.
In other words, cancer survivors are aging and come to the cancer journey with more and more comorbidities, just like the rest of the population. But this adds to the challenges of care coordination, what she called “the invisible work” that happens when the care team—PCPs, oncologists, and specialists—works together to keep the patient’s needs from falling through the cracks.
“People are living years with lung cancers, which is wonderful,” said Callaway. “But how do they live with the hypothyroidism and the blood sugar challenges?”
A March 14, 2019, update of NCCN Survivorship Guidelines includes a revised definition that reflects that fact that guidelines apply throughout the continuum of care and to long-term survivors. Callaway said the University of Colorado advises patients to tell healthcare providers what cancer agents they were given, “for the duration of their life … adverse events may be delayed.”
Immunotherapy has been a game changer for many patients, but it’s not without costs—physical, emotional, and financial, she said. Intimacy and sexual health may be interrupted. “Our patients have many unmet needs when they finish treatment. Relationships may have changed, for better or for worse. Many people are able to return to work, but many are not.”
The handoff back to the PCP can be emotional; some patients are ready for it and some don’t want to leave the oncologist. Then there’s the matter of conflict between professional societies over follow-up care. For example, NCCN recommends that women on tamoxifen have an annual gynecological assessment every 12 months if a uterus is present, but the American College of Obstetricians and Gynecologists (ACOG) says these women are at no increased risk of uterine cancer and require no additional monitoring beyond routine care, according to an ACOG guideline reaffirmed in 2019.
Survivorship care plans. Callaway said a good plan is simple, easy for the patient to use and the PCP and specialists to find within the electronic health record (EHR). The patient must have control over who sees the plan. While evidence that survivorship plans improve quality of life is limited, Callaway cited a 2017 study by Spears et al, that found when an advanced practice nurse administered the plan, there was improved quality of life and cost effectiveness. A study from Majhail et al, found that plans can reduce stress. A significant review article highlighting the benefits of cancer survivorship care, including care plans, appeared in the New England Journal of Medicine in December 2018.
The most basic truth about a care plan? “If patients understand their survivorship plans, they are more likely to use them,” she said.
Challenges ahead. As more patients live with cancer, Overholser said more PCPs are getting questions about life after treatment. And they don’t always feel equipped to answer them, she said, especially questions about the cancer treatment. More and more, PCPs are asked about the psychosocial decisions, and increasingly they deal with the cardiovascular and metabolic aftermath of some therapies.
The healthcare infrastructure must do more to facilitate the movement of patients and information back and forth between oncologists and primary care, she said. There’s not much formal training among PCPs in survivorship care, Overholser said, and a 2017 study by Rubenstein et al found that in 12 advanced primary care practices, cancer survivors were not recognized as a unique subgroup and physicians could not easily identify survivors based on the EHR.
But the biggest challenge ahead is the rising rate of comorbidities. Overholser cited data from BMJ Open that show multimorbidity affects 23% of the general population, including 65% of those who are Medicare eligible. Among those with cancer, the most common conditions were cardiovascular and metabolic: diabetes, congestive heart failure, cerebrovascular. Overholser said these conditions may be a bigger threat than cancer to long-term survival.
Again, there’s good news, and bad news. “Primary care only sees a handful of cancer survivors,” Overholser said. But when it comes to obesity, metabolic syndrome and high blood pressure, “These are the issues we see every day.”
The most powerful tool that the entire care team has, Callaway said, is patient engagement. If providers can figure out how to harness the desired behaviors of patients, she said, the neuroscientist Leonard Kish called it, “the blockbuster drug of the century.”