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Journal of Oncology
NAVIGATION & SURVIVORSHIP
The Official Journal of the Academy of Oncology Nurse Navigators ® SEPTEMBER 2010
VOL 1, NO 4
Where Does Navigation Fit into Long-term Survivorship Care? Leadership Council Lillie Shockney, RN, BS, MAS Johns Hopkins Breast Center Johns Hopkins University School of Medicine Baltimore, Maryland Sharon Gentry, RN, MSN, AOCN, CBCN Derrick L. Davis Forsyth Regional Cancer Center Winston-Salem, North Carolina Nicole Messier, RN Vermont Cancer Center Burlington, Vermont Pamela Matten, RN, BSN, OCN St. Joseph Hospital Orange, California Elaine Sein, RN, BSN, OCN, CBCN Fox Chase Cancer Center Partners Rockledge, Pennsylvania
By Lillie Shockney, RN, BS, MAS Administrative Director, Johns Hopkins Breast Center; Distinguished Service Associate Professor of Breast Cancer, Johns Hopkins University School of Medicine; Associate Professor, Johns Hopkins University School of Nursing, Baltimore, Maryland
hen we look at the role of navigation across the continuum of care, it commonly begins with screening for cancer (such as recruitment of patients from the community to have screening mammograms) to completion of the patient’s cancer treatment. Until now, that has been an acceptable ending point since patients are commonly followed by the oncology team for years after treatment is done. With the growing number of individuals being diagnosed with cancer and the increasing shortage of oncology spe-
Tricia Strusowski, MS, RN Helen F. Graham Cancer Center Christiana Care Health System Newark, Delaware
Linda Fleisher, MPH, PhD(c) Fox Chase Cancer Center Cheltenham, Pennsylvania
By Daniel Denvir
Susan M. Gardner, RN, CBEC, CBCN Valley Medical Center Renton, Washington Jay R. Swanson, RN, BSN, OCN Saint Elizabeth Cancer Institute Lincoln, Nebraska Carol Lewis, RN, BSN, OCN, CRNI Memorial Hermann The Woodlands, Texas
cialists, oncology specialists will no longer be able to follow cancer survivors long term. Baby boomers are in midlife now and they constitute a large segment of the population, resulting in an increase in the number of those diagnosed with some form of lifethreatening cancer. Add to that the fact that people are living longer, and it is understandable that there are more patients now and will be even more in the future in need of cancer treatment. Furthermore, fewer medical students are choosing oncology as their specialty, which magnifies the problem con-
siderably.1 No longer will an oncologist be able to say to a patient, “I will be treating your cancer and will be following you forever.” Instead, the conversation will sound more like, “I’ll be treating your cancer and following you for a period of time after treatment is completed. Then you will be transitioned to ‘X person’ for your long-term survivorship care needs.” This will lead to questions such as, “Who is the ‘X person?’” and “How will such a transition happen and when?” These are questions that must be Continued on page 2
Making the Transition to Survivorship WASHINGTON, DC—Thanks to earlier detection, an aging population, and improved treatment, more people are living, and living longer, with cancer. Today, there are 11.4 million survivors in the United States, up from just 3 million in 1971. Survivorship care is an increasing focus in the cancer care community, as signaled by the recent attention paid by major healthcare organizations. The Centers for Disease Control and Pre-
vention (CDC) and the Lance Arm strong Foundation released A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies in 2004, which was followed in 2005 by the Institute of Medicine’s (IOM) pivotal report, From Cancer Patient to Cancer Survivor: Lost in Transition. Five years after the IOM report, the transition to survivorship remains a shaky one, despite steady progress and heightened attention. At the 5th
Biennial Cancer Survivorship Research Conference held in June, 539 oncologists, primary care physicians, epidemiologists, social scientists, and survivors from 44 states and 10 foreign countries were present to take stock of the field. Many of the talks and presentations focused on how to build a bridge between active treatment and survivorship. • Data from the CDC’s Behavioral Risk Factor Surveillance System
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Where Does Navigation Fit...
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addressed now, and some cancer centers have already done so and developed survivorship clinics. Developing a transitional survivorship care program What needs to happen to develop a transitional survivorship care program? 1. Agreement from the oncology specialists that a survivorship program is needed 2. Development of algorithms by stage of disease and prognostic factors when a cancer survivor is ready to make the transition 3. A psychological support program to help the patient with the transition process 4. A mechanism for creating a treatment summary of the patient’s cancer treatment (eg, the patient underwent a lumpectomy with sentinel node biopsy for a stage I breast cancer that was estrogen-receptor positive, human epidermal growth factor receptor 2 negative) 5. A mechanism for documenting what long-term survivorship care should consist of for this specific patient (eg, frequency of mammograms and clinical breast examinations, bone density test, etc) 6. Training of healthcare professionals who will be providing cancer survivorship care 7. Training of primary care physicians in the community regarding cancer survivorship care. The nurse navigator’s role The nurse navigator can be instrumental in the development and implementation of such a transitional care model by preparing the patient at the
The breast cancer survivor volunteer team.
time of the first encounter with the oncology team, explaining what the continuum of care process will be, extending it beyond the completion of treatment. Preparing a patient up front will make acceptance of the transitional process easier later on. The navigator can also initiate the psychological support the patient will need during and after treatment as he or she progresses across the continuum of care into survivorship care. Some cancer centers, like ours at Johns Hopkins, have developed and implemented a breast cancer survivor volunteer team. These women, specially trained for providing one-on-one support, are matched with a newly diagnosed patient based on her age at diagnosis, stage of disease, and anticipated treatment plan. Such an individual provides the patient a mirror image of
Breast cancer survivor volunteers at the completion of the Avon Walk for Breast Cancer.
September 2010 I VOL 1, NO 4
herself in her near future. Equally important, the survivor volunteer can support the patient through the transitional phase of care, communicating to her about her own experience in the past with migrating over to long-term survivorship. Our team members cover the full spectrum of medical possibilities— stage 0 to stage IV, ages 22 to 70+, genetically positive, local recurrence, distant recurrence, and all forms of treatment for breast cancer. An additional valuable responsibility of the navigator can be to create the treatment summary document that will be needed by the survivorship care provider as well as provided to the patient. The navigator can also flag the patient’s record when the last visit with the oncology specialist is due and ensure that the treatment summary is completed and an appointment with the survivorship provider is arranged on completion of that last visit. The navigator must communicate with the survivorship care provider to ensure a smooth transition and provide support to the patient, who may be anxious about leaving the oncology team she has become dependent upon physically and psychologically. Obviously, many other steps are needed for a successful transition. De veloping the algorithms alone requires a staff unto itself, and the nurse navigator should be a task force member involved with the development of this tool. The creation of educational materials for the patient and the primary care physician is important too so that there is an understanding of what long-term side effects from treatment still need to be monitored, how often, and why (eg, bone density test for someone who has had aromatase inhibitor hormonal therapy). Equally important is a mechanism for the patient to be referred back to the oncology team in the event that there
are signs of possible recurrence of the cancer, locally or in the form of metastatic disease. For patients needing additional support with the psychological transition from “patient” to “survivor,” survivor retreats can be offered. The Johns Hopkins Breast Center has had survivor retreats in place for more than a decade. These 2-day, overnight-stay events provide the breast cancer patient an opportunity to be with others who have recently completed their acute treatment (eg, surgery, chemotherapy, and radiation) but may still be on hormonal therapy and/or biologic targeted therapy and are in need of psychological support to find their “new normal.” Their fear of recurrence is the primary reason preventing them from moving forward with their lives and accepting the idea of seeing their oncology team less often. They must learn how to cope with long-term side effects of treatment, differentiate between lingering or delayed development of side effects from treatment versus new-onset of metastatic symptoms, gain confidence again in their health status, and understand the importance of moving forward and eventually away from their oncology team and back to their community providers. Measuring success To be able to measure the success of the navigator serving as the facilitator for transition, statistics should be maintained regarding the number of patients transitioned, their stage of disease, compliance with transitioning the patient at the appropriate time (agreed upon based on the algorithms developed), and the number of newly diagnosed cancer patients who have been seen promptly because of clinic visit time freed up as a result of transitioning. It is also possible to take it to the next level and produce a financial report that depicts the increase in revenue made possible by reducing the number of long-term follow-up visits and increasing the number of new patients being treated. Conducting patient satisfaction surveys after transition can provide excellent feedback as to how the patients are adjusting psychologically to care in the survivorship clinic. If survivor retreats are held, the number of patients attending each retreat should be measured and results on their presurvey stress index questionnaire compared with their immediate postretreat results and again at 6 months postretreatment to ensure that what they have learned and experienced from a coping perspective has been sustainable. ● Reference 1. Klabunde CN, Ambs A, Keating NL, et al. The role of primary care physicians in cancer care. J Gen Intern Med. 2009;24:1029-1036.
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Making the Transition to Survivorship were used to examine whether survivors received recommended treatment and follow-up information. According to the CDC study, just 35% received a written summary of treatment, and only 69% of survivors reported receiving any follow-up care instructions at all. These documents are essential to effective survivorship care. The IOM report recommends, “Patients completing primary treatment should be provided with a comprehensive care summary and followup plan that is clearly and effectively explained. This ‘Survivorship Care Plan’ should be written by the principal provider(s) who coordinated oncology treatment.” • A Florida team discovered that patients and medical oncologists view survivorship care plans positively. In “Survivorship Care Planning in Colorectal Cancer: Perspectives From Survivors and Providers,” researchers used semistructured interviews with seven cancer survivors and a handful of providers, including four medical and two radiation oncologists, two nurses, and one social worker. The interviews were analyzed through a grounded theory approach and atlas.ti software. Researchers found that medical oncologists have concerns, however, about increased demands on their time and are worried about transferring patient care sooner. • Researchers at the University of Michigan conducted a pilot project offering transition visits to breast cancer survivors who have recently completed treatment. The visits covered a range of survivorship issues, but emphasized concerns identified by the patient in a survey completed in advance of the visit. Patients reported high levels of satisfaction with the program, but many said they would have preferred the visits to have taken place sooner after the end of treatment. Patients also reported an improved understanding of whom to call about symptoms, what symptoms to watch for, and what standard follow-up tests to expect. The study also found decreased levels of concern among survivors. • Another study sought to evaluate cancer survivorship care being delivered in community settings affiliated with the National Cancer Institute (NCI)-funded Cancer Research Network (CRN). Researchers conducted semistructured interviews with “expert informants”—primarily people serving in leadership roles at 10 of the 14 CRN sites—and employed a modified grounded theory approach to analyze the data. Although respondents expressed support for survivorship care, a coordinated multidisciplinary team rarely provided follow-up. www.AONNonline.org
Instead, most sites relied on “an ‘informal collaboration’ between primary care physicians and oncologists.” And according to the study, few sites were yet considering the implementation of survivorship care guidelines. • A study by researchers at California’s City of Hope reported that education and goal setting boost institutional change in the provision of survivorship care. “How Survivorship Care Is Changing Across the Nation” evaluated 155 multidisciplinary teams that took part in the Survivorship Education for Quality Cancer Care program between 2006 and 2008. The program is a 3-day course on survivorship funded by the NCI. Participating teams chose three goals and were then evaluated at 6, 12, and 18 months. They were found to be meeting those goals with significant success, which increased the later the point of evaluation. Goals included the creation of support groups, treatment summaries, and survivorship care plans. A lack of collaboration, however, between oncologists and primary care physicians remains a major barrier to effective survivorship care. In addition, both oncologists and primary care physicians have significant doubts about primary care physicians’ capacity to treat cancer survivors, according to Paul K. J. Han, MD, MA, MPH, former program director at the NCI’s Division of Cancer Control and Population Sciences, where he oversaw the Survey of Physicians Attitudes Regarding the Care of Cancer Survivors. Final survey results have not yet been released. A focus on the point of transition can help to foster a collaborative environment. A pilot project at the University of Colorado, Denver and its affiliate, the Children’s Hospital, for example, emphasizes a structured multidisciplinary transition to survivorship. The multidisciplinary team can include a wide array of providers, including those with a focus on rehabilitation. Michael D. Stubblefield, MD, of Memorial Sloan-Kettering Cancer Center, New York, discussed the important role played by rehabilitation medicine specialists in cancer survivorship treatment, which he defined as “specialist[s] in the identification, evaluation, and rehabilitation of neuromuscular, musculoskeletal, and functional disorders associated with cancer and its treatment, emphasizing the restoration and maintenance of function and quality of life.” The particular focus of his practice is “radiation fibrosis syndrome,” which he describes as the musculoskeletal and neuromuscular complications that can be caused by radiation. He cites upper extremity pain in survivors of breast cancer. Chemotherapy and surgery on an
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elderly breast cancer patient, for exam- construct, and health professional ple, can lead to radiculopathy, which can schools’ curricula have generally not cause rotator cuff weakness, tendonitis, included much content in this area. This and adhesive capsulitis. needs to change, but a larger task is proCancer rehabilitation approaches the viding continuing medical education to patient from many angles, considering professionals who have completed their the combined effects of cancer, cancer formal training and are encountering treatment, and other conditions— cancer survivors in their practices.” throughout the entire continFocused training in suruum of care. Given the high vivorship is lacking for medand increasing number of surical oncologists and primary vivors, Stubblefield called for care physicians alike. Areas in more rehabilitation specialists which more training is needto focus on cancer survivoring include prevention of secship. Although there are ondary cancers, long-term fewer than 300,000 survivors complications and sequelae, of spinal cord injury, it has its rehabilitation, detection for own subfield, whereas cancer recurrence, pain manageMichael D. rehabilitation does not. ment, and end-of-life care. Stubblefield, MD Aside from the rehabilitaMarcus Plescia, MD, MPH, tion physician (or physiadirector of the CDC Division trist) and the medical team (oncolo- of Cancer Prevention and Control, gists, primary care physicians, pain knows the difficulties of providing primanagement and palliative care, etc), mary care to survivors firsthand, espethe rehabilitation team can include an cially in uninsured communities. array of specialists: physical, occupa“I am a primary care provider,” he told tional, recreational, and lymphedema attendees. “I have firsthand knowledge therapists; speech and language pathol- of taking care of survivors and not really ogists; and prosthetists and orthotists. having a whole lot of information about The Cancer Survivorship Research the time that they were treated for their Conference demonstrated the flurry of illness. They generally see a lot of speactivity being undertaken in this nas- cialists, and there’s not a very coordinatcent field, and pointed to the impor- ed system for getting that information.” tance of educating a wide array of pracBut those disparate points in the cantitioners to provide survivorship care. cer care continuum are gradually being According to the IOM report, “Cancer linked, and survivorship is now widely survivorship care as a distinct phase of accepted as an integral part of the canthe cancer trajectory is a relatively new cer care continuum. ●
Who Is Responsible for Breast Cancer Follow-up Care? Confusion Abounds Among Survivors By Dawn Lagrosa
CHICAGO—Clear assignment of responsibility for routine breast cancer follow-up care is needed to help optimize the use of healthcare resources, according to a study by FUP2 Trial investigators presented at the Annual Meeting of the American Society of Clinical Oncology. Early-stage breast cancer patients participating in a randomized controlled trial to evaluate a survivorship care plan were asked to identify the physician “primarily responsible for your breast cancer followup care.” Patients had completed adjuvant chemotherapy or radiotherapy at least 3 months previously and were without recurrent or new primary cancer. Although these patients were under active routine follow-up at a tertiary cancer center in Canada, one third considered their family physician (FP) primarily responsible for
their breast cancer follow-up care. Of 408 patients, 33% (135) identified their FP as primarily responsible (of which, 26% identified their FP as solely responsible; 7% identified their FP plus a cancer specialist). Of patients who had received adjuvant systemic therapy, 35% (124/350) were significantly more likely to identify their FP as primarily responsible, as were 54% (98/183) of those within 2 years of diagnosis (P = .01 and P <.001, respectively). Clearly, confusion exists among patients as to who is primarily responsible for routine follow-up care. The authors concluded, “In the context of the growing prevalence of breast cancer survivors on routine follow-up and the challenge of rising healthcare costs, our results suggest that there is a need for clear allocation of responsibility for routine follow-up care.” ●
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COST OF CARE
Cancer Survivors May Forgo Medical Care Due to Financial Concerns An Interview with Kathryn E. Weaver, PhD, MPH By Karen Rosenberg
study led by a Wake Forest University School of Medicine researcher calls attention to a widespread but often overlooked issue in cancer survivorship care. The researchers found that many cancer survivors in the United States, particularly those less than 65 years of age, delay or forgo needed medical care because of financial concerns.1 In this interview, lead author Kathryn E. Weaver, PhD, MPH, discusses the implications of the findings for medical professionals caring for cancer survivors. Dr Weaver is assistant professor, Department of Social Sciences and Health Policy, Division of Public Health Sciences, Wake Forest University School of Medicine, Winston-Salem, North Carolina. Why did you and your colleagues undertake this study? We’ve known for some time that cancer diagnosis and treatment can have a negative impact on the financial health of cancer survivors, but we didn’t know whether this might impact their ability to access medical care or whether this effect would persist long after their can-
cer diagnosis and treatment was completed. We also wanted to determine whether race and ethnicity are associated with the likelihood of forgoing care. For the study, we used a very large dataset, the National Health Interview Survey, a population-based sample of US adults. Combining data from surveys from 2003 through 2006, we identified 6602 adult cancer survivors and 104,364 adults with no history of cancer. More than half of the cancer survivors were more than 5 years after diagnosis. What were the main study findings? Among adult cancer survivors, the prevalence of forgoing care because of cost was 7.8% for medical care, 9.9% for prescription medications, 11.3% for dental care, and 2.7% for mental healthcare. We found that the cancer survivors were more likely than adults without cancer to forgo care but only in the under 65 years group. That wasn’t the case in the over 65 group, most likely because of the nearly universal health insurance coverage with Medicare in
Journal Journalof ofOncology Oncology
NAVIGATION & SURVIVORSHIP
The TheOfficial OfficialJournal Journalofofthe theAcademy AcademyofofOncology OncologyNurse NurseNavigators Navigators®®
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September 2010 I VOL 1, NO 4
the over 65 group. Study results also showed that black and Hispanic cancer survivors were more likely than whites to forgo prescription drugs and dental care because of concerns about cost. Among those who were not eligible for Medicare, were cancer survivors less likely than others to be insured? There are data, not just from our study, that cancer survivors are actually more likely to be insured than other individuals. That is likely because in many cases, for insurance purposes, a cancer diagnosis is a kind of a catastrophic condition that might qualify people for disability or Medicaid or other types of coverage. Lack of insurance is certainly a predictor of forgoing care, but we statistically controlled for insurance coverage, and the differences between survivors and adults without cancer persisted. Many of the racial and ethnic disparities that we observed were lessened and, in some cases, eliminated when we statistically controlled for insurance coverage along with other indicators of socioeconomic status, such as education. Were there differences among patients with different types of cancer? We examined this in a very preliminary way because we didn’t have very large samples of survivors with different diagnoses. But we found that breast and prostate cancer survivors were the least likely to forgo care. The highest rates of forgoing care were among women with cervical cancer and also among survivors who had multiple cancers. I think these results make sense based on demographics. There were racial and ethnic disparities among the survivors, and cervical cancer rates are higher among ethnic minorities. Survivors with multiple cancers likely just have more medical needs and more financial stressors associated with cancer. What can healthcare providers do to address patients’ concerns about cost and help ensure that they get the care they need? One thing that can be done immediately is that financial considerations need to become part of the conversation between patients and healthcare providers when they’re talking about cancer care and follow-up care. I suspect now it’s just not part of the conversation in many cases, and healthcare providers may not know that cancer sur-
vivors are going without care. A good way to start is just asking patients and survivors, “Do you have any financial barriers to getting the care that you need?” If that’s out in the open, then perhaps providers can work with social workers to help get survivors connected to financial resources. They can also provide referrals to community organizations that provide financial assistance to cancer survivors, such as CancerCare. The National Cancer Institute also has a database of financial assistance resources for survivors. Finally, if providers know that finances are a concern, they may be able to recommend less costly but just as effective treatments. For example, they may recommend a generic drug that’s on the insurance list rather than one with a more expensive copay. Or they may be able to suggest alternative methods of care. So just raising awareness of the problem is the first step to resolving it. Yes, certainly. It’s important to have more attention drawn to this critical issue for survivors. There is a great need for ongoing health services even long after a cancer diagnosis because of the long-term effects of cancer and its treatment. Also, cancer survivors may be at higher risk for many comorbid conditions, and those need to be treated as well. You just had another study published about the number of cancer survivors with young children. Do they have unique issues that need to be addressed? We found that more than 1.5 million cancer survivors in the United States are living with children less than 18 years of age.2 Again, I think that often family considerations are not part of the conversation between healthcare providers and patients, and I suspect that many people will find the conclusions of that study quite surprising. They are not consistent with our ideas about who gets cancer. Greater awareness of how cancer affects the family can help healthcare providers address the special concerns of those with young children. ● References 1. Weaver KE, Rowland JH, Bellizzi KM, et al. Forgoing medical care because of cost. Assessing disparities in healthcare access among cancer survivors living in the United States. Cancer. 2010;116:3493-3504. 2. Weaver KE, Rowland JH, Alfano CM, et al. Parental cancer and the family. Cancer. June 28, 2010. Epub ahead of print.