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The Survivorship Care Gap: Delivery Models—What Works, What Doesn't

DiGiulio, Sarah

doi: 10.1097/01.COT.0000419647.13601.55

Increasing research paints an ever clearer picture of the type of care that cancer survivors need—surveillance education, stress management, physical activity and nutrition consultation, and depression screening, among others—but experts agree that the gap is as wide as ever in delivering that care to patients.

The gap stems from the fact that during oncology care, the primary care gets cut out, explained Patricia A. Ganz, MD, Professor of Health Services and Medicine at UCLA Schools of Medicine and Public Health and Director of the Division of Cancer Control Research at the Jonsson Comprehensive Cancer Center. “Meanwhile this whole period of very intense medical care is missing from the primary care physician's perspective.”

Ganz was a member of the committee that wrote the Institute of Medicine's landmark From Cancer Patient to Cancer Survivor: Lost in Transition report, which aimed to put survivorship issues front and center on the cancer care agenda (OT, 12/10/05 issue).

“The report said this was a neglected area of the cancer care continuum and that the millions of people who are living post-treatment without any evidence of cancer really didn't have any guidance or any coordination of their care,” Ganz said in a phone interview. But, now, seven years after the report was released, “the challenge has been to develop strategies and models of care to do a better job.”

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Models Effective in Theory, But Not in Practice

A recent review (now available online ahead of print in the Journal of Cancer Survivorship (DOI: 10.1007/s11764–012–0232-z) that the effectiveness trials of several different models of follow-up care for post-treatment survivors concluded that there is a lack of high-quality randomized trial evidence on how to effectively implement models of care across cancer types and across different care settings.

“We found in the review of evidence, that while there is effectiveness [to show what works], we didn't see a lot of studies that actually have looked at translating that research into routine practice or care,” said the lead author, Doris Howell, RN, PhD, the Royal Bank of Canada Financial Group Chair of Oncology Nursing Research and Education at University Health Network's Princess Margaret Hospital and Associate Professor of the Lawrence Bloomberg Faculty of Nursing at the University of Toronto.

The researchers reviewed randomized controlled trials conducted between 1999 and 2009 that analyzed the effectiveness of nurse-led models of survivorship care for cancer patients, family-physician-led models, and models where follow-up care was provided by the oncologist in the cancer center.

Results in the nurse-led follow-up models of care showed no significant differences in quality of life or disease recurrence outcomes compared with standard oncologist-led follow-up care models, and found that patient satisfaction levels were associated with nurse-led care models.

“A key finding within the research was that most of those trials were conducted in low-risk populations including adjuvant breast cancer patients, post-surgical treatment colorectal cancer patients, and adjuvant prostate cancer patients—and that was one of the gaps we identified,” Howell said in a telephone interview. “There hasn't been a lot of research in more high-risk patients who were at higher risk for recurrence and psychosocial and symptom problems.”

To make real progress in meeting the ongoing needs of cancer survivors, the research needs to reach a consensus on the most effective way to find a standard of care that transitions patients from acute cancer treatment to long-term survivorship care, she added. But, one of the biggest challenges is the complexity in the system of cancer care delivery. “Every type of cancer has a different kind of team, delivering care in a different way.”

There really needs to be a system change that's feasible in routine care to integrate primary care and specialist cancer care, for post-treatment for survivors, she said.

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On Survivorship Care Plans

Key to the IOM report was the recommendation that survivorship care plans should written for cancer survivors detailing the type of cancer treatments they had received, ongoing care directions, and any special recommendations based on specific side effects or complications, all tailored for each individual patient.

“The plan is not just for the patient, but also for the general care physician and anyone else the [cancer patient] sees,” Ganz said. “We're giving a lot of new drugs, a lot of targeted therapies, and we have no idea what the late effects are going to be. If somebody ten years from now is having unusual side effects, it would be good for the patient to know what they got—and they're not going to remember. And that would be hard to get out of the medical record.”

The Commission on Cancer's “Cancer Program Standards 2012: Ensuring Patient-Centered Care” (, released in August 2011 by the American College of Surgeons), added as a cancer center accreditation requirement that by 2015, centers must develop and prepare survivorship care plans for cancer patients who complete treatment that includes a record of care received, important disease characteristics, and a follow-up care plan.

But, incorporating the documents as part of standard cancer care has been slow, Ganz said. “I would say most of the cancer centers are really trying to do something, but they don't know how to do it. … We're really on the upward hill of the campaign.”

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‘Substantial Time Burden’ in Practice

A big challenge to implementing care plans and treatment summaries into routine practice is the time and attention they require. A study of treatment summaries and survivorship care plans at seven NCI-designated comprehensive cancer centers and six community centers reported a “substantial time burden” associated with creating the individualized, detailed reports (Journal of Cancer Survivorship 2011;5:358–370).

More than a third of the sites estimated that the plans required at least one hour per patient to complete, and 31 percent of the sites reported spending more than one hour reviewing the treatment summary and survivorship care plan with the patient. And despite the amount of time spent on creating these plans, the study also found that on average, fewer than half the treatment summaries across the centers and fewer than two-thirds of the survivorship care plans met the standards recommended in the IOM report.

“Our data show there is incredible variability in how survivorship care plans are conceptualized, put together, and implemented,” the lead author, Carrie Stricker, PhD, CRNP, a medical oncology nurse practitioner at the Abramson Cancer Center and Clinical Assistant Professor of Nursing at the University of Pennsylvania, said in a phone interview.

“Those 13 sites had dedicated funding for survivorship care clinics, and even they were not able to do a stellar job of providing survivorship care planning. … By no means would we say survivorship care plans don't work, but we need evidence to be generated to help us understand whether they do or not. They should be viewed as only one part of a much bigger picture of survivorship care delivery.”

Another study that tracked some 400 breast cancer survivors across nine different Canadian cancer care centers found no difference in cancer-related distress or patient-reported secondary outcomes when survivorship care plans (similar to the ones recommended by the 2005 IOM report) were used compared with when standard discharge visits were used, according to the 2011 study published in the Journal of Clinical Oncology (2011;29:4755–4762).

There is plenty of support for survivorship care plans, but not a lot of evidence to say they have an impact on clinical outcomes like decreasing recurrence or increasing length of survival, said Kevin Stein, PhD, Managing Director of the American Cancer Society's Behavioral Research Center, currently conducting survivorship research (see box).”

“In fact there's no data showing [the care plans] actually change people's behavior,” he told OT. “We need to look at it carefully to see if it can help us increase the transfer of information from oncology providers to primary care physicians, and can increase doctor-patient communication—or find that they don't work and figure out how we're going to move forward from there.”

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Survivorship Clinics

Stricker helps run the multi-site, LIVESTRONG-funded specialty survivorship clinic program at Penn. Nurse practitioners who see patients during treatment also see the patients at the end of treatment at the survivorship clinic to give a treatment summary and care plan, which also gets sent to the primary care provider.

“There's real attention to what has been described as ‘shared care,’” Stricker said about Penn's programs.

The ideal survivorship care model is that some of the patient's care is done by the primary care physician, but the patient still sees the oncology team for cancer follow-up—and it would be clear to both the patient as well as all providers who was doing what—“A survivorship care plan can really help in setting up explanations to that,” she said.

Stricker also oversees the free-standing clinics, which separate survivorship care by cancer type. There are currently clinics designated for, among others, breast cancer survivors, young adult survivors of pediatric cancers, testicular cancer survivors, and gynecologic cancer survivors.

Nurse practitioners provide care at these clinics, and key to both survivor programs at Penn is having a familiar care provider to go back to if there are persistent symptoms, late-effects, or other complications, she said. Also, the nurse who knows the patient is the one to make sure the patient has a primary care provider and follows up with the care recommended.

Nurse practitioners are particularly well-positioned to provide this type of long-term follow-up care because they are trained to focus on health promotion, symptom management, and to take a more preventative and comprehensive view of their patients, Sticker said.

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Adapting the ‘Ideal’ to a Smaller Scale

Resource availability is another problem in delivering survivor care: “One size does not fit all,” she said. “The resources at large centers such as Penn are not the same as what are available in community centers, for example.”

Diane McElwain, RN, MEd, OCN, Oncology Coordinator at York Cancer Center of WellSpan Health in Pennsylvania, has run cancer patient support programs there for the past 18 years, including survivor initiatives and special events. She and her colleagues have put together survivor support groups, as well as educational classes for survivors on topics like weight loss, osteoporosis, heart health, coping strategies, and caregiver support.

It's up to individual hospitals to decide how they are able to implement survivorship care—and especially nurses. “It's up to nurses, like we've always done, to advocate for our patients, and to get them involved in other programs that are out there regarding their health.”

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Working Out the Delivery System

The pool of research on survivorship issues is growing—in June, the Multinational Association of Supportive Care in Cancer and the International Society of Oral Oncology co-hosted their annual International Symposium on Supportive Care in Cancer—the largest meeting the organizations have hosted yet, with nearly 1,000 abstracts submitted covering both physical side effects cancer survivors face (cognitive effects, cardiovascular disease, and risk of recurrence) and psychological effects (stress, spirituality, and loss of identity).

“Many people think that when they finish treatment for cancer and there are no more visible effects of the cancer or the acute side effects of treatment, that you're done—but you're really not,” MASCC's President, Steven M. Grunberg, MD, noted in an interview after the meeting.

Despite research, recommendations like the IOM's, and a growing population of cancer survivors to care for, a system-wide solution is yet to be met. “We have an idea of what the problems are, but we're just trying to figure out first whose province they should fall in and who has the expertise to deal with them. The systems still need to be worked out.”

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A Place for Health IT

Moving health information technology tools into survivorship care is going to play a big role in finding survivorship care solutions, predicts Carrie Stricker, PhD, CRNP, a medical oncology nurse practitioner at the Abramson Cancer Center and Clinical Assistant Professor of Nursing at the University of Pennsylvania. “Health IT solutions can be used for tracking things like follow-up visits and tests—did patients follow up on referrals for physical activity, weight loss, and lymphedema prevention?”

* EMR: Electronic medical records could make creating care plans and treatment summaries much more efficient, Stricker added. “As our own data showed, it is now an onerous task in the absence of EMR integration to give people survivorship care plans—it takes a lot of time to get that data from the medical records and other sources, pull it together, and come up with an individualized plan.”

* A team at the American Cancer Society led by Kevin Stein, PhD, Managing Director of the Behavioral Research Center there, collaborating with the LIVESTRONG Foundation, is currently planning a project that explores methods of using cancer registry data and electronic health records to “auto-populate” treatment summaries and survivorship care plans. The investigation will be key to figuring out how to improve the model of creating and using survivorship care plans in a way that is not burdensome to either survivors or providers, he said.

* Web-based Models: The INSPIRE Project, a study conducted by University of Washington researchers, evaluated the functionality of a Web-based intervention to meet the psycho-educational survivorship needs of patients who had undergone hematopoietic stem cell transplantation. Researchers used a secure patient portal and website that covered three areas of survivor care education: health (cardiovascular, bone, and second cancer risks and recommendations); energy (fatigue, muscle weakness, and inactivity); and outlook (depression, distress, and social isolation).

In the study, published in The Journal of Cancer Survivorship (2011;5:292–304), patients were assessed at baseline and given initial direction to various content on the site based on their reported needs, but also at any time were free to navigate the site in any order they chose, explained lead author Karen L. Syrjala, PhD, Professor and Director of Behavioral Sciences and Co-Director of the Survivorship Program at Fred Hutchinson Cancer Research Center.

Periodically, patients were sent “push” emails throughout the intervention to direct them to different parts of the site, too. Of the 1,775 participants approached and informed about the study, 58 percent of those eligible enrolled and used the online program.

The model overcomes some of the challenges of delivering survivorship care, including financial barriers and workforce limitations—and patients can access the care on their own schedule when it is convenient.

“Internet methods such as ours overcome a number of these barriers,” Syrjala said via email. “The Internet and related technologies can link people individually to the tailored resources and expertise they need. Health technologies may entirely meet some essential elements of survivorship care.”

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Swelling Survivor Counts Predicted

In 2022, 18 million Americans are projected to be living with a history of cancer—a leap from the current 13.7 million, according to the American Cancer Society's “Cancer Treatment and Survivorship Facts & Figures 2012–2013,” published earlier this year in CA: A Cancer Journal for Clinicians (2012:62;220–241). The data highlight the need to address the physical, social, and psychological issues cancer survivors face, notes the senior author, Elizabeth R. Ward, PhD, ACS's National Vice President of Intramural Research.

“There needs to be attention paid, not just to helping patients survive, but to helping patients regain their previous function and regain their quality of life.”

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iPad Exclusive!

PODCAST: In an interview on the iPad edition of this issue, UCLA's Jonsson Comprehensive Cancer Center Prevention and Control Research Director Patricia A. Ganz, MD, explains why implementing standards for survivorship care is just as important as other patient education efforts on the cancer care trajectory. She coauthored the IOM's landmark Survivorship Report and has spent the past 20 years as a medical oncologist conducting research on health-related quality of life impact of cancer and its treatment.

To receive our iPad issues, download the free Oncology Times app from the App Store today! Visit or follow the link on

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Part 1 of a Series

Up Next: OT looks at ongoing studies investigating the key issues cancer survivors face—risk of recurrence, increasing co-morbidity deaths, psychological and psychosocial effects of cancer, and others—and reports on the research that experts agree needs to be translated into effective care systems.

© 2012 Lippincott Williams & Wilkins, Inc.
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