Urgent Fix Needed for US Cancer Survivorship Care

Kristin Jenkins

February 25, 2019

In the United States, the combination of an aging population, a "tsunami" of cancer survivors, and a projected 10% shortfall in the oncologist workforce by 2025 is putting quality cancer follow-up care in serious jeopardy, according to experts.

New models of cancer survivorship care delivery are urgently needed, say Deborah Mayer, PhD, RN, director of cancer survivorship, University of North Carolina Lineberger Comprehensive Cancer Center in Chapel Hill and Catherine Alfano, PhD, vice president of survivorship, American Cancer Society, Washington, D.C.

The pair say that "…a confluence of shifting factors is creating a perfect storm that means 'business as usual' for US health-care systems will increasingly be unable to deliver post-treatment follow-up care for cancer survivors that meet their needs."

Their commentary was published online February 6 in the Journal of the National Cancer Institute.

The duo argue that a "risk-stratified" approach needs to be developed to address this problem.

In a risk-stratified model of cancer follow-up care, evidence-based guidelines are used to assess the current and projected needs of cancer patients and to identify the expertise required to meet those needs. Patients are then assigned to specific "clinical pathways."

Providing the best possible follow-up care for cancer survivors in the most appropriate setting "will reduce demand pressures on oncology practices by allowing the cancer specialists to focus on those who are most in need of their expertise," said Mayer in a statement.

Mayer is also interim director of the National Cancer Institute's Office of Cancer Survivorship.

The editorialists point out that the number of cancer survivors in the US is projected to increase from 16.9 million in January of this year to 26 million by 2040.

In 2019, 67% of survivors or 10.3 million cancer patients have survived 5 or more years after diagnosis. A total of 45% have survived 10 or more years, and 18% have survived 20 or more years. 

Currently, 62% of cancer survivors are age 65 years or older, and this is expected to jump to 73% by 2040. They are also more likely than peers without cancer to have multiple comorbidities — the current per-patient average is five — in addition to their cancer-specific issues.

What's more, the current workforce shortage is expected to get worse.

In 2014, the American Society of Clinical Oncology (ASCO) estimated that by 2020, the demand for oncology services would increase by 56% while the growth of these services would increase by 14%. This is projected to lead to a shortfall of almost 1,500 oncologists needed for the initial care of cancer patients by 2025.

"[M]edical oncologists cannot possibly provide ongoing follow-up care for all survivors," Mayer and Albano point out.

They say the issue is enormous: "We simply cannot afford to fail. The health of our survivors, the happiness of our clinicians, and the financial well-being of our health-care systems and our patients and families are at stake."

Practical Advice

Since the risk-stratified survivorship care model was first brought forward in the US more than 10 years ago, "…little progress has been made in realizing this paradigm shift nor have alternative models emerged," the editorialists point out.

Professional organizations such as ASCO, the American Cancer Society (ACS), and the Oncology Nursing Society should provide guidance for the creation of risk-stratified, evidence-based, cancer survivorship care guidelines for clinicians and companion information pieces for survivors, they suggest.

At a January 2018 summit, ASCO and the ACS outlined recommendations to support new cancer follow-up practice strategies through research, practice change, clinical guidelines development, and policy reform, the authors note.

Meanwhile, in Australia, Canada, and the United Kingdom, the risk-stratified survivorship care model is already proving effective.

In the UK, for example, where the risk-stratified model was first introduced in 2010 as part of the National Cancer Survivorship Initiative, wait times for new patients are getting shorter, and patient adherence to surveillance guidelines is improving, said Mayer in an interview.

Sending patients back to their primary care providers for follow-up care has also provided cost savings while freeing up oncologists to see new patients, she added.

On the front lines of cancer care, oncologists running busy clinics and going about business as usual would find it very difficult to step back and think about models of survivorship care, Mayer acknowledged. Still, she told Medscape Medical News, there is "low-hanging fruit" that can quickly improve situations for patients and oncologists alike.

"When organizing the weekly clinic schedule, the very first thing I would consider is creating a day or half-day just for cancer survivor appointments," Mayer suggested.

"This allows survivors to sit in the waiting room with other survivors instead of with patients who are newly diagnosed and undergoing active treatment. This can bring back a lot of unpleasant memories for survivors."

Mayer said that some of her patients told her it was "a relief" to be scheduled with other survivors. They said it legitimized their needs, and helped them get over the feeling that they were taking up valuable time.

Mayer also learned from survivors that sitting next to a patient with active disease made them feel guilty about being well.

Survivors on a same-day schedule are more likely to strike up a conversation in the waiting room about common challenges, such as coping with the adverse effects of treatment, Mayer noted. This could make it easier for a breast cancer survivor to raise the issue of vaginal dryness with her oncologist, she said.

There are very real benefits for oncologists too. Seeing patients who are doing well reinforces the impact of cancer care while reducing the stress of having to deliver bad news to patients on a regular basis, said Mayer.

Dedicating specific times for appointments with survivors allows oncologists to focus on the needs of cancer survivors rather than ping-ponging back and forth between survivorship care and patients in active treatment. This also reduces stress and lowers the risk of burnout.

The second vital improvement needed, Mayer said, is enhancing communication between oncologists and primary care providers, healthcare administrators, and patients.

She noted that when a patient is diagnosed with cancer, primary care providers often feel left out of the loop. The patient is "taken away" only to be "dropped off" when cancer treatment ends.

"Periodic touchstones make primary care providers feel so much better about taking an active role in shared care," said Mayer. "We don't see this done well."

At the time of diagnosis, oncologists should provide the primary care providers with a letter that shares the diagnosis and the treatment plan for new patients, she advised.

"Let the primary care provider know that he or she will continue to see the patient for non–cancer-related health care and that at the end of treatment, you will send a summary and a plan for what's happening next," Mayer said.

Every time an oncologist sees a patient, the primary care provider should be sent a copy of the notes. If the notes are in "oncospeak," they will need to be summarized in a sentence, said Mayer. "We have to remind ourselves that our notes are for other people too."

Communication between oncologists and patients about the eventual return to a primary care physician also needs to improve, she pointed out.

"Patients don't always feel comfortable returning to their primary care provider," Mayer noted. "We have created this issue by letting patients feel like we are the only people who can take care of them."

Oncologists need to let patients know right from the beginning of treatment that they will be returning to their primary care provider for follow-up care. This message needs to be repeated periodically.

"The patient needs to be told that the oncologist will continue to do her clinical breast exam and annual mammogram," said Mayer. "She also needs to be told how many more visits she will have with the oncologist before she is discharged back to her family physician."

At the last visit, the patient's discharge back to her family physician is confirmed with the proviso that if a cancer-related issue develops, she will be seen by the oncologist. "This way, it's a soft discharge with a lot of reminders," Mayer pointed out.

Better communication with healthcare administrators is also essential, Mayer said. Oncologists need to start thinking about which patients are low risk and who is high risk. They need to work with administrators and business managers to get a breakdown of patients being seen, the percentage of patients on and off treatment, and for those off treatment, the time since diagnosis.

"Oncologists need to get a sense of how many patients are still in active treatment and how many are 10 or more years out," said Mayer. "They need to determine how these patients can be managed and flagged for transition back to their primary care provider."

"It's going to get harder and harder to fit them all in," she warned. "If you had a clinic 24/7 you would still run out of time and space to meet the need."

Mayer reports being a stockholder and advisor to CareVive. Alfano has disclosed no relevant financial relationships.

J Natl Cancer Inst. Published online February 6, 2019. Editorial

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