New oncology care models crucial as more patients live longer

The landscape of cancer care is in the middle of a seismic shift.

The number of cancer survivors in the United States will increase about 30% — from 13.7 million people to nearly 18 million — in the next decade, according to a collaborative report the American Cancer Society and NCI released in June.

The oncology workforce, however, is projected to grow at a significantly slower pace.

A study commissioned by ASCO and conducted by the Association of American Medical Colleges Center for Workforce Studies estimated demand for cancer-related care would increase 48% from 2005 to 2020, while supply would grow by about 14%. The disproportionality will result in a shortage of 2,550 to 4,080 oncologists within the next 8 years, study researchers wrote.

The trend has prompted those in the clinical community to consider new, innovative ways to care for patients who have completed their primary cancer treatment but still have specific medical, psychological and social needs.

“There simply will be less human resources to care for these individuals,” Carrie Tompkins Stricker, PhD, RN, AOCN, director of clinical programs and an oncology nurse practitioner at the University of Pennsylvania’s Abramson Cancer Center, told HemOnc Today. “With the widening gap between the supply and demand of oncology providers and cancer survivors, we’re increasingly going to need to integrate more efficient strategies that capture the needs of the survivors in an efficient way.”

Increased survivorship

Sixty-four percent of adults diagnosed with cancer will live at least 5 years, according to the CDC and NCI. Five-year survival among children ranges from 70% to 92%, and the 10-year survival stands at 75%.

Several factors are driving the growth in survivorship, according to Kevin D. Stein, PhD, managing director of the ACS’ Behavioral Research Center in Atlanta.

First, the overall US population is increasing and living longer than ever. Consequently, the proportion of older Americans — including millions who have had cancer — also is growing.

“They’re not dying of accidents, infectious disease and other conditions that have typically taken lives earlier,” Stein said in an interview.

Second, cancer detection has improved, which means a greater percentage of malignancies are caught at earlier stages when the chance of cure is highest.

The final factor is more effective — and increasingly personalized — treatment.

“We have improved methods of treatment that are helping people live when, previously, the diagnosis may have been fatal,” Stein said. “A case in point is childhood cancer. We now have over a 90% 5-year survival rate in acute lymphocytic leukemia. That’s a significant increase over 20 years ago. A large proportion of people who are diagnosed with leukemia as a child will survive and live long and healthy lives.”

Coordination of care

An Institute of Medicine report, titled “From Cancer Patient to Cancer Survivor: Lost in Transition,” examined the medical and psychosocial issues that survivors face as they transition out of treatment.

The report’s authors also offered suggestions about how survivors can improve their quality of life, noting that although the consequences of cancer are significant, there are ways to ease or even overcome them.

Coordination of care — specifically with regard to which providers should care for survivors once they leave the primary treatment setting — is the most important factor, according to the IOM report.

“There’s a lot more emphasis in the oncology community in looking at different models of care,” Mary McCabe, RN, MA, director of Memorial Sloan-Kettering Cancer Center’s Cancer Survivorship Initiative and chair of ASCO’s Cancer Survivorship Committee, told HemOnc Today. “Who is the right provider at the right time in the health continuum?”

That provider does not have to be an oncologist. 

“Following a patient with breast cancer who is 5 years out and basically healthy is not rocket science,” Sheldon Greenfield, MD, the Donald Bren Professor of Medicine and executive director of the Health Policy Institute at the University of California, Irvine, said in an interview. “There are a number of things to do, a number of things to check, and hopefully the evidence supports best practices in those 
areas.

“You do need an oncologist to deal with the primary treatment of all these cancers and with end-of-life treatment if they get metastatic disease,” Greenfield said. “You don’t much need the oncologist in the middle, but you need somebody.” 

Role of PCPs

To determine who that “somebody” should be, pilot programs have been launched to evaluate care models in which nurse practitioners and physician’s assistants serve as the providers for cancer survivors, McCabe said.

Some programs are investigating the concept of survivorship clinics, whereas others focus on a shared care model that involves primary care physicians.

“One of the major concerns right now is whether primary care providers are prepared to handle this influx of cancer survivors,” Stein said. “Are they trained to recognize the risk factors that cancer survivors may have as a result of having undergone these aggressive treatments?”

Study results presented at the 2012 ASCO Annual Meeting suggested PCPs are not prepared to recognize the long-term adverse effects of chemotherapy drugs used to treat breast and colorectal cancers.

Larissa Nekhlyudov, MD, MPH, associate professor in the department of population medicine at Harvard Medical School and a general internist at Harvard Vanguard Medical Associates, and colleagues mailed the Survey of Physician Attitudes Regarding the Care of Cancer Survivors to 3,596 physicians identified through the American Medical Association database.

The survey queried the participants on their knowledge of the late and long-term effects of four chemotherapy agents. In all, 1,072 PCPs and 1,130 medical oncologists responded.

The results suggested PCPs largely were unaware of the effects of certain chemotherapy agents.

For example, 95% of oncologists correctly identified cardiac dysfunction as a late effect of doxorubicin compared with 55.1% of PCPs.

Nearly 97% of oncologists identified peripheral neuropathy as a late effect for both paclitaxel and oxaliplatin, whereas 27% of PCPs recognized that late effect for paclitaxel and 22% identified it for 
oxaliplatin.

Seventy-one percent of oncologists identified premature menopause as one late effect of cyclophosphamide compared with 15% of PCPs. In addition, 52% of oncologists agreed that secondary malignancies were late effects of cyclophosphamide compared with 17% of PCPs.

The researchers also conducted a composite awareness analysis to identify the number of PCPs and oncologists who identified late effects for all four chemotherapy agents.

An “astonishingly low” 6% of PCPs identified late effects for all agents compared with 65% of oncologists, Nekhlyudov said.

“Not surprisingly, PCPs were really not aware of the late effects, and while oncologists were more aware, there was some room for improvement,” she said. “We certainly don’t know whether awareness of these late effects impacts quality of life or other measurable morbidities or mortality among patients. We need to get a better sense of that.”

Survivorship care plans

Although the study by Nekhlyudov and colleagues produced compelling findings, PCPs do not have easy access to the information about which they were surveyed, Greenfield said.

“The isolated primary care provider — how could they possibly know about the long-term cardiac effects?” he said. “Where would they even learn about it? They have no mechanism to learn about it.”

One way to ensure that PCPs are educated is to provide them with survivorship care plans (SCPs).

SCPs are electronic documents composed of two parts.

The first part essentially resembles a hospital discharge summary. It documents the patient’s cancer type, the time of and stage at diagnosis, the treatment regimen followed and risk factors associated with that treatment.

The second part outlines the survivor’s future care. It indicates which follow-up tests, surveillance and screening procedures are required, what health behaviors the patient should follow — such as smoking cessation or a nutrition plan — and information about community resources.

Survivorship plans are designed to yield better psychosocial and health outcomes, as well as improve care between providers and potentially improve patient–provider communication.

The plans ideally would be flexible, said Carly Parry, PhD, MSW, program director at the NCI’s Division of Cancer Control and Population Sciences in Bethesda, Md.

“Care plans will need to be living documents,” Parry told HemOnc Today. “[Patients’] illness course and their recovery course are dynamic, and so the care plan will need to change over time.” 

Barriers to use

Several barriers exist that prevent widespread use of care plans. First among them is time.

“Anecdotal and preliminary data suggest that they take up to 2 hours to generate,” Parry said.

That does not include the time it takes to present the information to the survivor.

“One of the things we’re looking at is developing a protocol to auto-populate survivorship care plans and treatment summaries using data from the electronic health records and cancer registries,” Stein said.

Reimbursement for the time spent completing the care plan also is inadequate, Stricker said.

“You can often bill just as much for a 10-minute follow-up visit with a high-complexity patient as you can for a 1-hour long visit to review a survivorship care plan and individualize that plan to the patient,” Stricker said. “Although it has been put into [legislation] that specific reimbursement would occur, that is not the reality yet.”

In addition, there is no standardized SCP template.

“There’s a Journey Forward template,” Parry said. “Livestrong has a care plan, and other organizations are also working on developing care plan templates.”

And although a standard template may sound like a good idea, efforts to design one could be challenging.

“We’re not even sure what the best template is from the perspective of survivors and providers,” Parry said. “It may be that the template for those two stakeholders differs.”

A lack of evidence

Although many clinicians tout care plans as good practice, there is no evidence to support that claim, Parry said.

Research is needed to ascertain their effectiveness, Stein added.

“We need to do studies where we follow those patients who have and have not received survivorship care plans to see if the outcome is an improvement in care and a reduction in negative clinical outcomes,” Stein said. “Does having a plan increase survival? Does it catch recurrences earlier? Does it lead to better management of long-term, late effects?”

Results of the only randomized controlled trial on SCPs in breast cancer completed to date showed they performed no better than a standard oncologist discharge visit.

The study by Grunfeld and colleagues — results of which were published in 2011 in the Journal of Clinical Oncology — included 408 women with early-stage breast cancer who completed primary treatment at least 3 months before enrollment.

All participants had a discharge visit with their treating oncologist before they were transferred to their PCP for follow-up care. Women in the intervention group also received an SCP, which a nurse reviewed with them during a 30-minute meeting. Those women gave a copy of the SCP and guidelines to their PCPs at their first visit.

Results revealed no differences between the groups on cancer-related distress — the primary outcome — or on any of the secondary outcomes, which included quality of life, patient satisfaction, continuity/coordination of care and health service measures.

In a study published in 2011 in the Journal of Cancer Survivorship, Stricker and colleagues examined treatment summaries and SCPs that were given to breast cancer survivors who were part of the Livestrong Centers of Excellence network and several community-based affiliates.

Thirteen sites participated. The researchers rated the SCPs for 65 patients against the IOM recommendations.

“Our findings showed that, on average, only 46% of the content that should’ve been included in the treatment summary was included,” Stricker said.

Less than two-thirds of the SCPs met the IOM content recommendations.

Despite the limited data, SCPs continue to remain a key element in survivorship care.

For example, the American College of Surgeons Commission on Cancer has mandated the use of SCPs in all of its accredited cancer centers by 2015, Stricker said. These centers serve more than 70% of the nation’s cancer survivors.

Best practices

Another critical component to improving survivorship care is the development of best practices.

“We have very little guidance for how to manage some of the long-term and late effects, as well as how patients should be managed over time,” McCabe said. “That’s where best practices come in, and where a number of organizations nationally are focusing time and energy to develop guidance for the follow-up of cancer survivors.”

ASCO’s survivorship and guideline committees are collaborating on guidance on particular symptoms, as well as their appropriate identification and follow-up.

“This will be a rolling effort. We hope to have specific information available in the spring,” McCabe said.

The ACS opted for a disease-specific approach, focusing on breast and colorectal cancers.

In addition, the ACS recently released formal guidelines on diet, exercise and weight control for cancer survivors. The organization recommends that cancer survivors:

No matter who provides it, care during survivorship must focus on the patient and the post-treatment challenges he or she will face. Secondary and late effects, ongoing symptoms and psychosocial issues such as depression and anxiety must be managed appropriately, Stricker said.

In addition, providers must not forget about non-oncologic issues.

“We have to be concerned about cancer taking too much of a focus in this population and non-oncologic conditions being under-addressed,” Stricker said. – by Colleen Owens

References:

American Cancer Society. Cancer Treatment & Survivorship Facts & Figures 2012-2013. Atlanta: American Cancer Society; 2012.

For more information:

When people talk about shared care, they often mean alternating visits between the oncologist and the primary care provider.

An article written by Kevin Oeffinger, MD, and Mary McCabe, RN, includes a figure that describes a model of shared care that is not about alternating visits (Oeffinger KC. J Clin Oncol. 2006;24:5117-5124). Rather, it is about principal responsibility lying with the oncology team during treatment and with primary care during survivorship. Responsibility shifts back to the oncology team should problems develop.  

That is the model of shared care I would support.

A colleague of mine, Jonathan Sussman, BSc, MD, MSc, recently completed a systematic review of models of shared care for survivorship for Cancer Care Ontario’s Program in Evidence-based Care. I was part of the team. It was a rigorous, systematic review looking at the all of the evidence for different models of care. It compared shared care, which is essentially primary care-led survivorship care, vs. studies that looked at nurse-led survivorship care vs. studies that looked at specialized clinic vs. studies that have looked at no follow-up, which is more of a self-care model.

The strongest evidence, because that’s where the randomized control trials with hard clinical outcomes exist, is for primary care-led follow-up.

There are some studies to support nurse-led follow-up. Those studies have looked at quality-of-life outcomes and patient satisfaction, but they have not looked at hard clinical outcomes. There is very little evidence regarding more intensive survivorship clinics, perhaps because they are newer and haven’t gone through rigorous evaluation.

Conceptually, I think the best approach is that put forward by the U.K. National Cancer Survivorship Initiative, which essentially suggests there is no one model. The approach must be tailored to the needs of the patient.

They estimate that 70% of patients during the survivorship period can manage with primary care-led or no close follow-up, 10% of patients need a more formalized shared care model, and roughly 20% need tertiary-level, intensive survivorship care because of complex late effects or ongoing treatment effects or psychosocial problems.

The challenge for us is to determine which patients need what approach.

Eva Grunfeld, MD, DPhil, FCFP, is a professor and director of research in the University of Toronto Department of Family and Community Medicine and a clinician scientist with the Ontario Institute for Cancer Research. She may be reached at Department of Family and Community Medicine, 500 University Ave., Room 352, Toronto, ON, M5G 1V7; email: eva.grunfeld@utoronto.ca. Disclosure: Grunfeld reports no relevant financial disclosures.

Nurse-led models work as well as physician-led models.

Selecting the appropriate cancer survivorship model depends on what and who is available. Generally, nurses are more available and accessible than cancer experts in other disciplines.

The multidisciplinary survivorship clinic is wonderful. I wish there were such a resource available and accessible to every cancer survivor, but there is not. These entities exist in urban and academic centers. 

Likewise, the shared care model requires that the patient’s oncologist and the local primary care provider can and will “share.”

Effective communication is a difficult thing to mandate. I do not see oncologists willing to invest the time to teach their primary care counterparts what short- and long-term sequelae to expect, what they might look like, appropriate assessments, etc. Busy primary care providers may not have the time to invest in learning, either.

Yet this model depends on a new knowledge base for each. And the reality is, in primary care settings, it may well rest on the “office nurse” anyway, and that person is already shouldering a tremendous load. It is a nice thought, but I do not see it as being terribly realistic.

There are lots of data to indicate that nurse-led models in many settings — not just cancer care or survivorship but other disease-specific situations — work very well, if not better than physician-led models.

Patients are more willing to talk and are more open with nurses, especially nurses who have the knowledge-base in that particular area. Adherence to follow-up and medication and treatment regimens often is noted to be better in situations in which a nurse is the patient’s primary contact.

Still, in the case of survivorship, this can’t be the responsibility of just any nurse. We know that most acute care oncology nurses are not particularly well versed, or even interested in, long-term survivorship issues. This is a very specialized and dynamic area of oncology nursing.

Pamela J. Haylock, PhD, RN, FAAN, is CEO of the Association for Vascular Access and former president of the Oncology Nursing Society’s board of directors. She has been an advocate for advancing survivorship at local, national and international levels for the past 2 decades. She may be reached at Association for Vascular Access, 5526 West 13400 South Ste #299, Herriman, UT 84096; email: pjhaylock@indian-creek.net. Disclosure: Haylock reports no relevant financial disclosures.