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."

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.

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."

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. [horizontal ellipsis] We're really on the upward hill of the campaign."

CARRIE STRICKER, PHD, CRNP: "Nurse practitioners are particularly well-positioned to provide this type of long-term follow-up care."

'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. [horizontal ellipsis] 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."

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.

DIANE MCELWAIN, RN, MED, OCN, said that although clinics at large cancer centers, like Penn's, are the gold standard for survivorship care, most work under grants and have more resources (including staff) than most community cancer centers do.

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."

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."

STEVEN M. GRUNBERG, MD: "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."

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).

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."

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."

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.

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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.

WASHINGTON, DC-At a time when more than 30 percent of all US tobacco-related deaths are due to cancer, a broad-based strategy is needed to combat tobacco use. So said speakers here at an Institute of Medicine National Cancer Policy Forum workshop. That strategy includes raising tobacco taxes; ensuring that tobacco settlement funds to states be used only for health-related projects; graphic warnings on cigarette packages; and a more aggressive role for oncologists and nurses in helping tobacco users quit.

The expectation, organizers said, is that a report from the meeting will be released by the end of the year, focusing on reducing tobacco-related cancer incidence and mortality.

In 2003, the American Society of Clinical Oncology issued a policy statement on US tobacco control, recommending that an independent commission study the tobacco problem in all its dimensions (OT, 7/10/03). The statement charged that despite the urgent public-health priority of achieving a smoke-free world, a number of tobacco control efforts have been "fragmented and incremental, leaving many important issues unaddressed."

In the United States today, unfortunately there is "a nagging feeling that this problem [tobacco use] has somehow been solved and it's time to move on to something else," said Howard K. Koh, MD, MPH, Assistant Secretary for Health in the US Department of Health and Human Services. But, nothing could be farther from the truth, he said. The health consequences of tobacco use continue to be a heavy and costly burden (direct medical costs due to tobacco use are about $96 billion annually).

Kenneth E. Warner, PhD, the Avedis Donabedian Distinguished University Professor of Public Health at the University of Michigan School of Public Health, provided statistics showing that currently 20 percent of Americans remain smokers; 70 percent want to quit; and 50 percent try to quit each year, but only 2.5 percent succeed. Of these, less than 10 percent are college graduates, more than 30 percent are in blue collar populations, and half have mental illness or substance abuse comorbidity, said Dr. Warner. Smoking is also on the rise among young adults as a group.

Given these statistics, there's an important role in oncology for smoking cessation, said Michael C. Fiore, MD, MPH, MBA, Director of the Center for Tobacco Research and Intervention and Professor of Medicine at the School of Medicine and Public Health, University of Wisconsin.

While they see the results of tobacco abuse, oncologists unfortunately have one of the lowest rates of tobacco assessment and counseling, he said. "With impunity, smokers come in and out of clinics today without their tobacco dependence being addressed," he said. But, tragically, even though about 70 percent of smokers report that they want to quit, only about 25 percent of patients ever have their tobacco use assessed by a clinician.

What needs to happen is a change in the "architecture of a clinical encounter" to address each patient's tobacco use head-on, he said.

Fiore cited the US Public Health Service 2008 clinical practice guidelines for treating tobacco dependence, which it termed "a chronic disease that often requires repeated intervention." In addition to counseling, those guidelines cite medications that are effective in helping smokers quit, including bupropion SR and varenicline and nicotine replacements: gum, inhaler, nasal spray, patch, and lozenge.

'Tobacco Cessation Performance Measure-Set'

Fiore pointed out that hospitalization provides a "propitious opportunity" to assess tobacco use and recommend a smoking-cessation program, if needed. He urged clinicians to give patients the national free quit-line phone number: 1-800-QUIT-NOW.

Calling the new Joint Commission measure set "powerful," he urged all health professionals-including oncologists-to take advantage of hospitalization as a teachable and reachable moment. Not only are many patients in the hospital because of a tobacco-caused disease such as cancer, but most US hospitals are smoke-free-which makes smoking during hospitalization very difficult for patients and can be a jump-start to cessation. Fiore urged health care professionals to make evidence-based smoking-cessation programs available in the hospital setting, which is not routinely done today.

Nurses Key

In addition to oncologists, nurses are also effective in helping smokers quit. "Nurses can make a difference; this is absolutely within their scope of practice," said Linda Sarna, DNSc, RN, AOCN, Professor and the Lulu Wolf Hassenplug Endowed Chair at the UCLA School of Nursing. She cited a review of 31 studies with a total of 15,205 participants that showed that compared with smokers who receive usual care, smokers who receive interventions for smoking cessation from nurses have a 28 percent greater probability of successfully quitting tobacco use for five or more months. But, she said, today "clinicians are not doing enough, not rapidly enough."

Sarna said professional barriers to clinicians intervening to help patients stop using tobacco include: lack of awareness of the Public Health Service clinical practice guidelines; lack of awareness of the national quitline; attitudes and beliefs about the patient's willingness to quit and the duty to perform an intervention; and myths and misperceptions about tobacco dependence, including concerns about causing stigma, guilt, and stress for the patient-who is already stressed.

Other barriers include competing priorities (lack of time); lack of reimbursement; and lack of expectations on quitting by cancer centers as part of quality care after cancer diagnosis and treatment. This latter barrier is especially troubling given that that there are 12 million cancer survivors, approximately 15.5 percent of whom are current smokers, she noted.

Graham Warren, MD, PhD, Director of the Tobacco Assessment and Cessation Program at Roswell Park Cancer Institute, agreed: "Increased survivorship in cancer patients warrants preventative efforts," he said, adding that mandatory tobacco assessment and cessation referral should be a clinical standard of care.

In cancer patients, he noted, tobacco: decreases therapeutic response; increases recurrence; increases toxicity; decreases quality of life; decreases survival; and increases the risk of a second malignancy.

Another speaker, Ellen R. Gritz, PhD, Professor and Chair of the Department of Behavioral Science and the Olla S. Stribling Distinguished Chair for Cancer Research at the University of Texas MD Anderson Cancer Center, also agreed on the importance of helping cancer survivors quit using tobacco. A member of the planning committee for the IOM tobacco meeting, she noted that the rates of current smoking among patients with lung or head and neck cancers are 40 to 60 percent, and that overall up to 30 to 50 percent of patients smoking at diagnosis do not quit, or they relapse following quit attempts.

Gritz also noted that an NCI conference on treating tobacco dependence at cancer centers in 2009 highlighted the importance of treating tobacco dependence in the context of cancer care and survivorship.

Asked by OT to comment on why tobacco use remains an entrenched public health problem (especially among those without a college degree), National Cancer Policy Forum member Otis W. Brawley, MD, Chief Medical and Scientific Officer and Executive Vice President of the American Cancer Society, said, "People with a poor education tend to smoke. Minorities tend to smoke.

"It's not just a black problem or a white problem; it's an American problem. Everybody needs to stop smoking."

Two-dimensional echocardiography is the most common modality for screening adult survivors of childhood cancer exposed to anthracyclines for possible heart failure. A study from St. Jude Children's Research Hospital, though, suggests that for some patients, 2D echo might not be enough.

The study, available online ahead of print in the Journal of Clinical Oncology (doi: 10.1200/JCO.2011.40.3584), showed that cardiac magnetic resonance (CMR) imaging identified a high prevalence of cardiomyopathy among adult survivors previously undiagnosed with cardiac disease.

The study, led by Gregory T. Armstrong, MD, a pediatric neuro-oncologist and Associate Member in the Department of Epidemiology and Cancer Control, described an evaluation of left ventricular structure and function in 114 adult survivors of childhood cancer, median age of 39. All had been exposed to anthracycline chemotherapy and/or chest-directed radiation therapy.

Cardiac MRI found that 14 percent of patients (16) had an ejection fraction of less than 50 percent. And 108 survivors previously undiagnosed with cardiotoxicity had a high prevalence of ejection fraction (32%) and cardiac mass (48%) that were more than two standard deviations below the mean.

Compared with CMR, 2D echocardiography had a sensitivity of 25 percent and a false-negative rate of 75 percent for detection of ejection fraction less than 50 percent, although 3D echocardiography had 53 and 47 percent, respectively.

Twelve survivors (11%) had an ejection fraction of less than 50 percent by CMR but were misclassified as 50 percent or more (range of 50% to 68%) by 2D echocardiography.

"In this high-risk population, survivors with an ejection fraction of 50 to 59 percent by 2D echocardiography should be considered for comprehensive cardiac assessment, which may include CMR," the researchers concluded.

The data may be of most interest to primary care physicians and internists who follow adult survivors of childhood cancer, Armstrong said in a telephone interview. "They should have a low threshold for referring these patients on to a cardiologist. Cardiomyopathy after anthracyclines is a progressive disease, and the sooner we detect it the sooner we can begin to intervene."

Although previous papers have compared MRI with echocardiography and MUGA scans, this is the first study done in cancer survivors, and the largest in any population, he said.

The study is part of the St. Jude Lifetime Cohort program, which is currently following approximately 4,000 adult survivors of childhood cancer.

The study's purpose was not to test MRI against 2D echo, Armstrong said, since cardiac MRI is known to be superior in detecting heart failure, but rather to identify the limitations of echo. "Not everyone with an ejection fraction of 50 percent or above [by 2D echo] is actually above 50 percent," he said. "As a clinician, when I get an echo of 55 percent [in an adult survivor] I know it might be lower than that.

"When they're in the 50 to 60 percent range and I know this is a population that received cardiotoxic therapy, I have to consider that this patient could still be in early stage of cardiomyopathy and may merit seeing a cardiologist, and potentially undergoing MRI as part of the workup, along with treadmill testing and serum biomarkers."

'Clinical Management Not Likely Changed'

Still, a heart failure specialist asked to comment on the paper for this article called it interesting and provocative, but said it does not address whether this type of imaging approach would lead to a meaningful change in management.

"What you have is a more expensive technique that may or may not lead to changes in patient management and patient outcome," said Douglas L. Mann, MD, Professor and Chief of the Cardiovascular Division of Washington University School of Medicine in St. Louis. "It may be more sensitive, but it may not help with patient care."

He said the premise behind the research is sound-studying whether a more sensitive methodology can be used to detect mild clinical dysfunction in people who have been treated with chemotherapeutic agents known to be harmful. And the study was essentially positive, as it suggests that MRI is more sensitive. "But the question is, what does this mean for the primary care physician?"

He said that normally, if an ejection fraction goes down to lower than 35 to 40 percent-with 50 percent being normal-a variety of different medical regimens would be implemented to help stabilize the patient. "But although they show they were able to detect ejection fractions that were less than 50 percent better with MRI, a lot of the very minor abnormalities that MRI picked up would not be clinically actionable; it wouldn't have triggered a change in patient ^-management-Is the additional cost of screening going to change patient outcomes or is it just a more sensitive measure?"

Mann noted that the study cohort was relatively healthy, and that if the people had been sicker the MRI study might have changed management in more of them.

With this cohort, however, Mann estimated that therapy might have changed in only one or two of the 16 patients picked up by CMR with ejection fractions less than 50 percent.

An additional study might try to determine who best to follow with MRI as well as with chemical markers of cardiac injury, he said. "As opposed to just doing MR imaging on everybody, there might be people who have borderline ejection fraction who could be followed with a combination of biomarkers and intermittent MRI more effectively than an echo strategy."

Still, Mann said, the study is important because it continues to focus the oncology community on the importance of serial followup of adult survivors of childhood cancers, "which for many years we ignored."