It’s been more than a decade since the Institute of Medicine recommended that all cancer survivors receive survivorship care plans, yet many patients still do not receive them. Transitioning out of active cancer treatment can be nerve-racking for many people, but oncology nurses can help by bringing up survivorship care plans early and often with their patients, as well as helping them navigate the often-confusing healthcare system when they are ready to return to their primary care physicians. We explore this important topic in our cover story, “Cancer Survivorship: Right-Sizing Care.”

After treatment, many survivors also develop anxiety around their cancer coming back. This fear of recurrence can be debilitating for people who experience it, and it can have major psychosocial implications. In this issue’s Nurse’s Note, editor in chief Deborah A. Boyle, MSN, RN, AOCNS, FAAN, tackles this important topic, which is all too prevalent in the cancer community. Boyle offers tips that nurses can pass on to patients, and she stresses the importance of bringing up the subject. Even if patients don’t broach the topic themselves, it may still be top of mind.

Our 2 Partner Perspectives also touch on how nurses can aid patients who are experiencing stress and anxiety. One, from our partners at CancerCare, focuses on cancer as trauma, because a diagnosis can definitely qualify as a traumatizing and life-changing event. The other, from Cancer Support Community, focuses on tools, resources, and coping mechanisms that nurses can offer patients facing psychosocial distress.

Also in this issue, our Continuing Education section features updates from the 

, hosted by Physicians’ Education Resource

, LLC, which covered everything nursing professionals need to know, from tumor type basics to adverse event management.

 is enjoyable and helps nurses better help their patients.

Articles

From the Chairman

The September issue of Oncology Nursing News® offers a wealth of information on how oncology nurses can help their patients navigate psychosocial issues, from the moment of diagnosis and beyond.

Nurses Can Address Psychosocial Needs, From Diagnosis to Survivorship

It was estimated that there would be more than 1,700,000 new cases of cancer in the United States in 2019.

 Many patients will receive state-of-the-science biomedical treatment but will not receive care that adequately assesses or addresses their psychosocial concerns.

 This is problematic in part because distress and unmet psychosocial needs can have adverse implications for health outcomes, health service use, treatment adherence, and healthcare costs.

 Further, research suggests that treating and addressing patients’ distress can lead to improved overall health and reduced healthcare costs.5,6

Given the immediate and long-range implications of distress among persons with cancer, the Institute of Medicine

and the National Comprehensive Cancer Network (NCCN)

 have recognized that screening, referral, and follow-up for psychosocial concerns are critical to ensuring quality cancer care for the whole patient. Further, the Commission on Cancer of the American College of Surgeons released accreditation standards requiring practices to screen cancer patients for psychosocial distress

, and the American Society of Clinical Oncology (ASCO) recommends regular screening of adults with cancer for depression and anxiety.

Providing patients and clinicians with a distress screening and referral program that is comprehensive, easily accessible (ie, online), and patient centered in terms of resource/referral preferences can benefit patients and, potentially, the broader system of care. A number of validated measures exist to assess distress

 Among the tools that assess patient preference for help, few ask the patient to delineate the type of help they wish to receive or have the ability to integrate across electronic systems via a web-based platform. Even fewer were developed and validated for use in community-based care settings, despite the fact that a majority of patients are treated in community cancer centers, hospitals, and private practices.

The Cancer Support Community developed CancerSupportSource (CSS), a web-based psychosocial distress screening, follow-up, and referral program to assist community-based cancer centers in meeting distress screening accreditation standards linked to patient-centered cancer care

 and facilitate access to and provision of psychosocial care to patients in the community. The initial theoretical framework and item content of CSS are grounded in the critical domains of psychosocial, practical, and physical needs.

Further, the design of the screening program reflects Cancer Support Community’s model of patient empowerment.

 In this model, patients are supported and encouraged to identify their needs and play an active role in partnering with their healthcare providers, make important lifestyle changes, and enhance their ability to access information and resources that can address their needs.

Five factors were identified and confirmed:

CSS is a reliable, valid, multidimensional distress screening program with the capacity to identify those at risk of significant anxiety and depression, known indicators of poor health outcomes.

 The study findings provide the psychometric foundation to support the use of CSS in community-based and hospital-based oncology settings, and CSS is currently implemented across a network of community-based cancer support facilities (eg, Cancer Support Community, Gilda’s Club), as well as oncology practices and hospital cancer centers nationwide.

The tool demonstrates strong internal consistency reliability and test-retest reliability, a factor structure that is replicable, and adequate convergent and divergent validity. Additionally, the depression and anxiety risk scales demonstrate high sensitivity coupled with adequate specificity. When implemented in oncology practice, this tool fulfills the American College of Surgeons Commission on Cancer patient-centered standards for distress screening,

NCCN Guidelines for distress management,8 and ASCO Quality Oncology Practice Initiative certification standards.

1. American Cancer Society. Cancer Facts & Figures 2019. 

https://www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2019.html

2. Forsythe LP, Kent EE, Weaver KE, et al. Receipt of psychosocial care among cancer survivors in the United States. 

. 2013;31(16):1961-1969. doi: 10.1200/JCO.2012.46.2101.

3. Buzaglo JS, Miller MF, Karten C, Longacre ML, Onukwugha E, Weiss ES. Medication adherence among patients with chronic myeloid leukemia: the impact of financial burden and psychosocial distress. 

. 2017;8(4). jons-online.com/issues/2017/april-2017-vol-9-no-4/1618-medication-adherence-among-patients-with-chronic-myeloid-leukemia-the-impact-of-financial-burden-and-psychosocial-distress. Published April 2017. Accessed TK.

4. Han X, Lin CC, Li C, et al. Association between serious psychological distress and health care use and expenditures by cancer history. 

. 2015;121(4):614-22. doi: 10.1002/cncr.29542.

5. Azuero C, Allen RS, Kvale E, Azuero A, Parmelee P. Determinants of psychology service utilization in a palliative care outpatient population. 

. 2014;23(6):650-657. doi: 10.1002/pon.3454.

6. Carlson LE, Bultz BD. Efficacy and medical cost offset of psychosocial interventions in cancer care: making the case for economic analyses. 

. 2004;13(12):837-849; discussion 850-856. doi: 10.1002/pon.832.

Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.

 Washington, DC: Institute of Medicine; 2008. Report No. 9780309111072.

8. National Comprehensive Cancer Network. Distress management. clinical practice guidelines. 

9. American College of Surgeons Commission on Cancer. Cancer program standards: ensuring patient-centered care. facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx. Published 2016. Accessed TK.

10. Andersen BL, DeRubeis RJ, Berman BS, et al; American Society of Clinical Oncology. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: an American Society of Clinical Oncology guideline adaptation. 

. 2014;32(15):1605-1619. doi: 10.1200/JCO.2013.52.4611.

11. Jacobsen PB, Donovan KA, Trask PC, et al. Screening for psychologic distress in ambulatory cancer patients. 

. 2005;103(7):1494-1502. doi: 10.1002/cncr.20940.

12. Watanabe SM, Nekolaichuk CL, Beaumont C. The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement. 

. 2012;21(9):977-985. doi: 10.1002/pon.1996.

13. McCorkle R, Young K. Development of a symptom distress scale. 

14. Hodgkinson K, Butow P, Hunt GE, et al. The development and evaluation of a measure to assess cancer survivors' unmet supportive care needs: the CaSUN (Cancer Survivors' Unmet Needs measure). 

. 2007;16(9):796-804. doi: 10.1002/pon.1137.

15. Lowery AE, Greenberg MA, Foster SL, et al. Validation of a needs-based biopsychosocial distress instrument for cancer patients. 

. 2012;21(10):1099-1106. doi: 10.1002/pon.2008.

16. Johnson MR, Clauser SB, Beveridge JM, O'Brien DM. Translating scientific advances into the community setting. 

. 2009;24(3):24-28. doi: 10.1080/10463356.2009.11883440.

17. Miller MF, Mullins CD, Onukwugha E, Golant M, Buzaglo JS. Discriminatory power of a 25-item distress screening tool: a cross-sectional survey of 251 cancer survivors. 

 2014;23(10):2855-2863. doi: 10.1007/s11136-014-0742-4.

Guide to Implementing Screening for Distress, the 6th Vital Sign: Moving Towards Person-Centered Care. 

Toronto, ON: Canadian Partnership Against Cancer; May 21, 2009.

19. Golant M, Buzaglo J, Thiboldeaux K. The engaged patient: the Cancer Support Community's integrative model of evidence-based psychosocial programs, services, and research. In: Holland JC, Breitbart WS, Butow PN, Jaconsen PB, Loscalzo MJ, McCorkle R, eds. 

. 3rd ed. New York, NY: Oxford University Press; 2015.

20. Punnen S, Cowan JE, Dunn LB, Shumay DM, Carroll PR, Cooperberg MR. A longitudinal study of anxiety, depression and distress as predictors of sexual and urinary quality of life in men with prostate cancer. 

. 2013;112(2):E67-E75. doi: 10.1111/bju.12209.

21. Chambers SK, Baade P, Youl P, et al. Psychological distress and quality of life in lung cancer: the role of health-related stigma, illness appraisals and social constraints. 

. 2015;24(11):1569-1577. doi: 10.1002/pon.3829.

22. Stafford L, Judd F, Gibson P, Komiti A, Mann GB, Quinn M. Anxiety and depression symptoms in the 2 years following diagnosis of breast or gynaecologic cancer: prevalence, course and determinants of outcome. 

. 2015;23(8):2215-2224. doi: 10.1007/s00520-014-2571-y.

23. Roth RS, Lowery JC, Davis J, Wilkins EG. Psychological factors predict patient satisfaction with postmastectomy breast reconstruction. 

. 2007;119(7):2008-2015; discussion 16-7. doi: 10.1097/01.prs.0000260584.09371.99.

24. QOPI Certification Program. American Society of Clinical Oncology website. 

practice.asco.org/quality-improvement/quality-programs/qopi-certification-program

Partner Perspectives

Providing patients and clinicians with a distress screening and referral program that is comprehensive, easily accessible (ie, online), and patient centered in terms of resource/referral preferences can benefit patients and, potentially, the broader system of care.

Distress Screening and Referral Are Key for Patients With Cancer

Getting a cancer diagnosis is a lifechanging experience for all patients, but for those who live in rural areas, receiving appropriate care and treatment can pose additional challenges.

“Patients in rural areas have less access to specialists and are often diagnosed at a later stage in their disease,” says Karen Wickersham, PhD, RN, assistant professor at the University of South Carolina College of Nursing in Columbia. Wickersham discussed the differences between rural and urban breast cancer outcomes during her presentation at the 2019 American Society of Clinical Oncology (ASCO) Annual Meeting, shortly after the organization announced a new task force aimed at reducing disparities and improving outcomes for patients with cancer and survivors who live in rural communities.

ASCO identified teleoncology as 1 of several areas where physicians and nurses could address broadband access, reimbursement policies, and other solutions that could improve remote access to cancer care. The National Cancer Institute projects that by 2026, the number of cancer survivors will rise from 15.5 million to 20.3 million2 and increased survivorship, combined with the rates of new cancer, will result in a major increase in the demand for cancer care.

“Digital health in cancer care is a very topical issue,” Wickersham says. “Telemedicine offers a way to improve access to specialists, screening, and prevention.”

Wickersham sees nurses working at the forefront of telemedicine and says that Australia has already successfully used nurses to deliver oncology care in rural areas. She believes Australia could serve as a model as the United States continues to develop more telemedicine programs.

Katherine Kim, PhD, MPH, MBA, assistant professor at the Betty Irene Moore School of Nursing at the University of California, Davis, has worked on a number of research projects exploring how telehealth can benefit patients in rural areas. One recent study examined how telehealth could be used for rural patients undergoing chemotherapy by monitoring symptoms and offering ongoing conversations and support surrounding their treatment.

“We developed software to be used with a smartphone or tablet, allowing oncology patients a direct connection to their care coordinator at the cancer center,” Kim says. “Nurse coordinators had the ability to answer questions or concerns that might arise between visits and provide patients with information on sleeping issues, nausea, and other concerns that often arise during chemotherapy.”

The telehealth software also allowed nurse coordinators to coordinate logistics for future oncology visits. “If [patients are] suffering from anxiety or depression, we might arrange for them to see a psychiatrist during their next visit,” Kim says. “By organizing in advance, they can make the most of their appointment, since they are traveling some distance to the cancer center.”

Another recent survey, Kim says, looked at how rural patients with multiple myeloma obtain information on their condition, how they choose their treatment, and what options might be put in place to help them with their decisions.

BRINGING CHEMOTHERAPY TO RURAL COMMUNITIES

At Sanford Cancer Center in Sioux Falls, South Dakota, patients from rural areas travel as far as 100 miles to receive chemotherapy. To help patients get treatment closer to home, Sanford Health launched a virtual infusion program last year.

“We utilize telemedicine technology to offer chemotherapy and other infusion treatments to patients at 3 virtual infusion centers located in rural communities,” says Susan Halbritter, CNP, of Sanford Cancer Center. “Medical staff at these centers provide chemo infusion treatments with oversight from a CNP [certified nurse practitioner] based remotely at the Sanford Health cancer center in Sioux Falls.”

During the 2 years leading up to the program’s launch, Halbritter says, the Sanford Health team trained staff at the rural centers on safety issues, standard operations, and prompt problem resolution, ensuring a seamless process. Only then were patients gradually transitioned from the main Sanford Cancer Center to a rural infusion center.

“One of our concerns was patients who might have an adverse reaction to their chemo infusion,” Halbritter says. “In the past, a nurse at a remote infusion center would stop the infusion at the first sign of a reaction and send the patient to the nearest emergency department just to be safe.”

Nurses can now call the Sanford Cancer Center CNP, who, using telemedicine, can observe the patient, listen to their heart and lungs, and determine when it’s safe to resume treatment. “In the past, an adverse reaction would have postponed their infusion treatment,” Halbritter says. “Today, there are very few treatments that can’t be completed. We work with rural nurses to intervene promptly in the event of an adverse reaction, get the patient back to their baseline, and continue their chemo infusion.”

ASCO announces new task force to address rural cancer care gap [press release]. Alexandria, VA: American Society of Clinical Oncology; April 10, 2109. 

asco.org/about-asco/press-center/news-releases/asco-announces-new-task-force-address-rural-cancer-care-gap

Cancer statistics. National Cancer Institute website. 

cancer.gov/about-cancer/understanding/statistics

. Updated April 27, 2019. Accessed July 2019.

Feature Story

Getting a cancer diagnosis is a lifechanging experience for all patients, but for those who live in rural areas, receiving appropriate care and treatment can pose additional challenges.
 

Oncology Nurses Help Bring Telemedicine to Rural Communities

My first oncology nursing role was as a chemotherapy research nurse at our regional cancer center during the mid-1970s. Most of our patients had progressive or advanced cancer with limited treatment options, and thus were receiving clinical trial regimens. We saw a lot of malignant melanoma because one of our senior oncologists focused his research on it.

Following my clinic experience, I was in graduate school and went to the student health service to have a mole evaluated. It was on my lower forearm where I wore my watch, so it wasn’t always visible, but I noticed that it had turned maroon and had irregular borders. Yet during this visit, I was told it was nothing to worry about.

My first job after receiving my master’s degree took me 3000 miles from home to live on the opposite coast. A professional portrait was needed. Sensitive about the number of moles on my neck (later I would be told that I had dysplastic nevus syndrome), I made an appointment to have them removed. While there, I said to the dermatologist, “Do me a favor and remove this one from my forearm too. I’ve been told it’s nothing, but I want it taken off.” He acquiesced to my request.

Soon after that minor procedure, I traveled to Alaska to teach a weeklong oncology nursing core course. While there, I received a phone call from my physician telling me that I had malignant melanoma on my forearm and needed to return home immediately to undergo a wide excision and skin graft. Thus, my personal cancer journey began.

After I recovered from surgery, my early phase of survivorship was dominated by intrusive memories of all the patients with melanoma I had cared for who died. One, in particular, was a patient who presented with a small, unusual mole on his earlobe and was dead within 2 months. His gentle, smiling, freckle-laden face now became my constant companion. “Would I end up like him?” I worried. Somehow, I couldn’t recall any patient with melanoma who survived. I searched the literature to determine if this anxiety I was experiencing was common. I found some mention of this distress termed “recurrence anxiety.” However, little research had been done on this topic at that time.

Fast-forward to the present. Characterized as fear, worry, or concern relating to the possibility that cancer will come back or progress, recurrence anxiety is now recognized as the one response nearly all survivors can expect to experience.

 A theoretical model published in 1997 by Lee-Jones and colleagues

 suggested that a combination of cues with internal (ie, physical symptoms) and external (ie, physician appointments, media depictions) origins can trigger a range of cognitive and affective responses. These are often exacerbated by the misinterpretation of symptoms with an associated increase in somatic anxiety. Although the fear of cancer returning has received attention in more recent research, many gaps remain in our understanding of this phenomenon.

The majority of research has focused on breast cancer survivors with only isolated, small sample size investigations of other tumor types. The timing of the presentation of recurrence anxiety also requires more study, as it has been noted to occur both early in the treatment trajectory and after treatment cessation. The phenomenon’s association with specific cancers also merits scrutiny. Numerous risk factors have been identified, including younger age, introverted personality style, pre- or comorbid psychologic distress (ie, anxiety, depression neuroticism), fatigue, and unmet sexual needs, according to one study that focused on survivors with head and neck cancer.

Recent reports outline interventions to mitigate recurrence anxiety, including mindfulness-based stress reduction offered in 6 weekly group sessions, cognitive-behavioral therapy offered in 5 individual face-to-face sessions supplemented by 3 consults over 3 months, and combinations of these approaches.

 Smartphone applications have been developed to provide interactive, psychoeducational, phone-based problem-solving psychotherapy.

 This approach offers the advantages of brevity and portability. Early results of these interventions suggest considerable benefit.

Oncology nurses must expect some degree of recurrence anxiety in their patients who are navigating life following treatment cessation. Key nursing strategies include assessment, education, and resource identification. Even if patients do not verbalize worries, it is important that nurses ask about their concerns. With this inquiry, their fears are normalized. Patient and family education by the oncology nurse at the completion of cancer therapy should entail sharing information about the prominence of recurrence anxiety.

Talking about how patients will manage this response is critical, especially as family caregivers can experience their own version. Disparate approaches to recognizing a suspicious symptom (ie, a new source of pain, an increase in constitutional symptoms such as lethargy or changes in appetite) increase stress within the family. If the survivor chooses to cope by dismissing a suspicious symptom and the spouse urges immediate reporting of it, conflict can occur. Anticipatory discussion about how coping will prevail in the presence of anxiety about new symptoms fosters optimum decision making within a noncrisis situation.

Lastly, oncology nurses should be aware of the availability of cancer phase-specific support options. Groups addressing the stressors unique to the paradigm of living with a history of cancer offer the ideal platform for discussion about recurrence anxiety. Because of the often intense, long-term relationship oncology nurses have with their patients, their counsel about recurrence anxiety is critical to minimizing the emotional sequelae of living on after cancer.

Lebel S, Ozakinci G, Humphris G et.al. From normal response to clinical problem: Definition and clinical features of fear of cancer recurrence. 

Psychosocial Nursing Care Along the Cancer Continuum (3

2018. Bush NJ & Gorman L (Eds). Oncology Nursing Society Press: Pittsburgh, pp. 27-41, 2018.

Lee-Jones C, Humphris G, Dixon R, Hatcher MB. Fear of cancer recurrence: A literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. 

Mirosevic S, Thewes B, van Herpen C et.al. Prevalence and clinical and psychological correlates of high fear of cancer recurrence in patients newly diagnosed with head and neck cancer. 

Butow PN, Turner J, Gilchrist J et.al. Randomized trial of ConquerFear: A novel, theoretically based psychosocial intervention for fear of cancer recurrence

Atechi T, Yamaguchi T, Uchida M et.al. Smartphone problem-solving and behavioral activation therapy to reduce fear of recurrence among patients with breast cancer (Smartphone Intervention to Lessen fear of cancer recurrence: (SMILE project): protocol for a randomized controlled trial. 

Imai F, Momino K, Katsui J et.al. Smartphone problem-solving therapy to reduce fear of cancer recurrence among breast cancer survivors: An open single-arm pilot study. 

Nurse's Notes

Oncology nurses must expect some degree of distress from their patients. Here’s how they can make a difference.

When Patients Deal With Recurrence Anxiety, Oncology Nurses Can Help

Advancements in diagnosis and treatment are improving outcomes for patients with cancer. As a result, more patients are living long after treatment ends, though an efficient algorithm for building the right size and style of care each will need remains elusive.

Over a decade has passed since the Institute of Medicine (IOM) recommended that all patients completing active treatment for cancer receive a survivorship care plan (SCP).

 Many models of survivorship care have since been introduced to address a range of approaches. These include survivorship programs housed in the oncology setting, those led by primary care physicians (PCPs), and multidisciplinary survivorships clinics.

 Also, variations of these models exist and overlap.

More recently, a risk-stratified approach was implemented in England, Northern Ireland, and Australia to help clinicians personalize care pathways.

 Regardless of the model or approach, for certain patients, survivorship care should address health promotion, care coordinations, and the prevention and mitigation of late- and long-term effects of cancer and its treatment, including cardiac toxicity, cognitive changes, and lingering anxiety and/or depression.

As clinicians care for a growing number of cancer survivors, the urgency to identify the most efficient and effective method of survivorship care planning increases. More research is needed to evaluate the impact of survivorship care on patient outcomes and quality of life and determine best practices for streamlining care. Nurses are positioned to influence the future of survivorship care by advocating for and participating in initiatives geared toward bettering care throughout the cancer trajectory—something that is currently difficult to navigate.

“I’m a nurse with a PhD, and I think the system is difficult to navigate,” says Marci Lee Nilsen, PhD, RN, CHPN, assistant professor of acute and tertiary care in the School of Nursing and assistant professor of otolaryngology in School of Medicine at the University of Pittsburgh in Pennsylvania. “It’s overwhelming for patients.”

Survivorship is a distinct phase of living with cancer framed by completion of initial treatment and either recurrence, second cancer, or death.

 When patients require ongoing treatment, providers determine when entering survivorship care makes sense on a case-bycase basis. If patients step away for acute care treatment due to recurrence or second cancer, they return when treatment is once again complete. This journeying back and forth continues as needed. Although the IOM made clear in its 2006 report the importance of providing each patient with an SCP, studies have shown inconsistent implementation of the recommendation. 2 Even a quick review of the information identified for inclusion in SCPs underscores the value for patients and providers alike. Minimally, patients should receive details about tests and results; tumor characteristics; treatment start and stop dates; treatments, including response and toxicities; support services provided; contact information for institutions and providers; and care coordinator information.

Additionally, patients and PCPs should receive a written follow-up plan that summarizes the expected course of recovery and any ongoing therapy; recommended screening/testing/ exams, including schedule and provider; possible aftereffects of treatment, including symptoms; signs and symptoms of recurrence and new cancers; possible psychosocial effects; insurance and financial implications and assistance; lifestyle recommendations; genetic counseling (as appropriate); secondary prevention strategies; follow-up referrals; and information resources.1 Undoubtedly, the time and effort required to compile a comprehensive care plan can be burdensome, relative to the complexity of each patient’s situation and circumstances. Nonetheless, the SCP serves as an invaluable tool for clear, consistent communication, follow-through, and reference, particularly when all recommended information is covered. Improvements are needed to simplify the development of SCPs; remove identified barriers for implementation; and propose practical, actionable standards of practice. LATE AND

Cancer and its treatments take a toll on patients. Although a common (and feared) late effect is development of a recurrence or new cancer, other complications, such as cardiac toxicity— particularly for breast cancer survivors&mdash;and congestive heart failure, atherosclerotic disease, ischemia, hypertension, and myocardial depression, are serious and life-threatening.1 Adhering to recommendations for cardiac screening and monitoring for specific patient populations may mitigate the risk and severity of cardiac effects. Cognitive changes can be particularly frustrating for patients. Often referred to as chemo brain, they include impaired memory and decision making and difficulty concentrating.

Research is inconclusive regarding the root cause of cognitive deficiencies, but their impact on quality of life goals is wide-ranging and can lead to increased distress.1 Informing patients that they may experience difficulties in this area while not causing them undue alarm requires tactfulness and empathy.

Lingering anxiety and depression are not uncommon and should therefore be addressed. Interventions to prevent or minimize their severity begin with awareness and education and may include complementary measures such as aromatherapy and meditation or diet and nutritional modifications. Patients should not be caught off guard by anxiety or depression. Addressing the matter up front and early can help make their occurrence easier to identify and intercept.

The number of possible late and long-term effects of cancer and its treatment seems limitless. The least clinicians should do for their patients is have conversations about the most probable effects and provide as-needed education that is helpful yet not overwhelming.

Differences in care settings often influence or dictate the model of survivorship care. Perhaps the most important aspect involves who directs the care for cancer survivors. The most common yet least formal model begins with oncology-led care, transitioning to PCP-led care when deemed appropriate by the oncology team. Oncologist-led care is likely the least practical, considering that the number of patients living with cancer is estimated to increase from 16.9 million to over 22 million by the year 2030.3 Oncology practices will simply not be able to manage the workload of caring for new patients and patients in survivorship.

PCP-led care has its own limitations and concerns. PCPs are less familiar with the needs of post-treatment cancer patients than oncologists, so issues may arise that are either identified late or treated inappropriately. It’s easy to understand how survivorship care can quickly become complicated, especially when factoring in patient comorbidities such as diabetes, hypertension, obesity, and a host of other diseases. No consensus has been reached about who is best suited to manage the multiplicity of health issues that do or may occur during active treatment and survivorship. Survivorship clinics, which house many services in 1 location, are becoming more popular. Nilsen describes the University of Pittsburgh Medical Center (UPMC) Head & Neck Cancer Survivorship Clinic she helped develop and currently coordinates: Employing an integrative care model, the care team consists of a head and neck surgeon, an audiology assistant, a kinesiologist, a physical therapist, a dentist, and a medical consultant, all of whom provide services in 1 clinic. The workflow is patientcentric and begins with patient completion of a validated, reliable questionnaire to identify problems. Patients are then roomed and, because they are at higher risk of hearing loss, undergo a hearing screening. They will also have an audiogram, wax removal, or hearing aid repair (done at no charge), if indicated.

“If patients cannot hear you, then discussions with them will be problematic,” Nilsen says. While the audiologist works with the patient, the nurse reviews the paperwork. Nilsen then completes a treatment summary, so everyone has an overview of when the patient was treated, tumor site and stage, and type of treatment received. Next, the patient is screened for any swallowing or musculoskeletal problems. A patient who would benefit from physical therapy need not go elsewhere for treatment—the service is readily available at the survivorship clinic. Providing many services under 1 roof simplifies care coordination and helps ensure continuity of care.

Nilsen says the clinic’s success comes from its focus on the patient and collaboration of care, which help address many of the needs faced by head and neck cancer survivors. Some treatments, such as dental care (for which patients may not have insurance coverage), are paid for through grants and fund-raising efforts. Creative problem solving helps make sure patient needs are met.

Other benefits of survivorship clinic models are coordination of care and availability of so many services in 1 place, Nilsen says. This model minimizes the difficulty of navigating a complex healthcare system.

A crucial component, according to Nilsen: communication, particularly in survivorship care. Everyone involved with the patient must have open lines of communication. “It’s important to bring up the issue of survivorship care early,” Nilsen says. “There are so many issues with head and neck cancer. It’s best for patients to be informed, not surprised.”

Although survivor clinics such as the UPMC model provide a convenient and invaluable option, not everyone has access to this type of care, nor is this model needed for all types of cancer, particularly those considered low risk. Another promising approach offering both flexibility and applicability for a range of patients and circumstances is the personalized risk-stratified pathways model.

Deborah Mayer, PhD, RN, AOCN, FAAN, Francis Fox Hill Distinguished Professor in the School of Nursing and director of survivorship at the Lineberger Comprehensive Cancer Center at the University of North Carolina at Chapel Hill, is a recognized champion of cancer and oncology nursing. In 2015, she was awarded the Oncology Nursing Society’s Lifetime Achievement Award for her many contributions to the field. Mayer is a proponent of risk-stratified survivorship care, which begins with differentiating survivors in high-volume groups from those in high-risk groups. She acknowledges that data are missing to recommend who fits the kind of survivorship care they need: “We need a risk-stratified approach because we can’t be all things to all people.” That may be hard for clinicians to hear, but it makes sense.

Mayer says that patients with breast, prostate, and colorectal cancers (high volume) are likely to do relatively well following treatment, whereas those with head and neck cancers (high risk) will likely face a myriad of late and longterm effects unique to this patient population.

Adult survivors of pediatric cancers fall into yet another category. These patients are susceptible to being lost in care as their focus shifts toward college or career goals and away from cancer, even as physical and psychosocial effects remain cause for concern.

Categorizing patients by volume and risk can help providers simplify the care management process while ensuring patients receive needed services and support. This model makes financial sense by improving patient outcomes and controlling cost. Studies conducted after the model was piloted in the United Kingdom showed that 50% to 80% of survivors in the highest- volume group (colorectal, breast, and prostate) were able to self-manage care after treatment.

The basic premise of the model consists of triaging patients according to need and type of provider involvement, or right-sizing care. “If a patient is 20 years out from breast cancer, there is no reason to come to a cancer clinic for follow-up, yet many of them do,” Mayer says. “It’s also emotionally rewarding for the oncologist to see someone is doing well,” Mayer pointed out. Again, flexible, patientfocused care is possible, but the business-asusual model would need to change for this to happen efficiently.

Without question, cancer changes everything. Patients who receive cancer diagnoses will face acclimating to and accepting survivorship care as another facet of what will become their new normal. Clinicians who competently guide patients into and through this phase of care ease the burden.

Although it may come as a surprise to many, Mayer says she believes survivorship care is not new. “There’s nothing special about survivorship care,” she says. “It’s been labeled, but it’s follow-up care. It’s what we’ve been doing all along.”

Hewitt M, Green&#64257;eld S, Stovall E, eds; Committee on Cancer Survivorship: Improving Care and Quality of Life, National Cancer Policy Board. 

From Cancer Patient to Cancer Survivor: Lost in Transition.

 Washington, DC: The National Academies Press; 2006.

Powel LL, Seibert SM. Cancer survivorship, models, and care plans. 

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Cover Story

Some oncology nurses are leading the improvement of survivorship care, a field that is becoming increasingly important in the world of cancer.

September 2019

Nurses Can Address Psychosocial Needs, From Diagnosis to Survivorship

Distress Screening and Referral Are Key for Patients With Cancer

Oncology Nurses Help Bring Telemedicine to Rural Communities

When Patients Deal With Recurrence Anxiety, Oncology Nurses Can Help

Cancer Survivorship: Right-Sizing Care