		Michigan State University College of Nursing

		Florence Schorske Wald Professor of Nursing

		Clinical Faculty, Frances Payne Bolton School of Nursing at Case Western Reserve University

		Clinical Nurse Specialist University Hospitals Seidman Cancer Center

		Director of Nursing Research at The James Cancer Hospital & Solove Research Institute Clinical Associate Professor The Ohio State University College of Nursing

This third and final installment emanating from our roundtable with oncology nursing experts focuses on survivorship, now universally recognized as a crucial aspect of oncology care. For more coverage of our Partner Perspectives roundtable discussions ,

: We have more than 13 million cancer survivors today. In 2005, the Institute of Medicine’s report, (From Cancer Patient to Cancer Survivor: Lost in Transition) made 10 recommendations, including that each cancer patient needs a survivorship plan because care is so fragmented, and the American Society of Clinical Oncology has published recommendations. What are some of the necessary components of a survivorship plan?

: It is really important to keep in mind the whole goal of a survivorship plan: to maintain quality of life and also to empower the patient and family. The plan needs to be specific to the type of cancer and response to treatments. Another really important component is the support services (psychiatric, nutritional, etc) and referrals to resources in the patient’s community. These are the elements that will really support people as they move forward, as well as provide them with a “medical home,” per se, by coordinating care.

: What are some of the challenges when a patient moves back to primary care? Palliative care isn’t just relief. It also involves prevention and endorsing a healthy lifestyle, including nutrition, exercise, and stress relief.

: Fragmentation is a huge problem. What happens is that the primary care physicians often feel unprepared to take the patients back, especially when they are continuing to have symptoms. The oncologists may be hesitant to release a patient from their care. We need to figure out how to involve the nurse practitioner in facilitating that transition back to primary care, with so many of the patients continuing to have symptoms and not having anyone to help them.

: This time of transition to survivorship also can be an opportunity for patients and families to change habits. It is a teachable moment. If we have as part of the plan new health behaviors and helping people to plan for their future—whether it is increasing exercise or changing diet&mdash;then the survivorship plan can work with the patient and the primary care doctor to set a path for the future.

: Nurses are in a fabulous position to be part of this discussion and to be leaders in the success of the survivorship care planning. I am a geriatric nurse practitioner, and we are going to have our patients for a very long time; they are going to have comorbidities, with cancer being one of them. Nurses can help the patient and the family to foresee the path that they are going to take with managing other nonmalignant comorbidities, as well as with their cancer treatment plans.

: How much should go into a survivorship plan?

: That is a very fluid discussion, and what goes into the plan is what we’re struggling with nationally. Do you put so much into it that it becomes so burdensome that it no longer has practicality? As clinicians, we know that something so large can be difficult to implement. I think it has to lie somewhere between practicality and a comprehensive approach.

: The research focuses mostly on whether we’re addressing all the checklist items. What the research is not doing, nor do we have enough knowledge of, is how if we focused on the residual and short-term effects during the transition, we could then better understand the late- and long-term effects. In addition, the family resources involved are virtually never in any plans.

: The research should be focused on the educational component as well. We have so many individuals who are now cancer survivors, and for medical schools, nursing schools, and physical therapy schools as well, we need to start to integrate this component into preparing these future healthcare providers. For example, if the diagnosis and treatment involve the central nervous system, what are some of the comorbid conditions that we need to be caring for and thinking about?

: There are some opportunities now for funding this research. Survivorship is on the agenda and in the scope of national organizations. We are now seeing government funding opportunities to help drive survivorship thought and survivorship care. I think in the next few years, we are going to see some changes and refinements in some of the care planning.

: This is really good news. People are living longer. Our institution has recently transitioned to an EPIC (electronic patient information chart) medical record system that is going to be integrative from the inpatient to the outpatient. I think the long-term effects of this are going to be very positive in developing an automated system to include this information in the survivorship planning.

Articles

Partner Perspectives

This third and final installment emanating from our roundtable with oncology nursing experts focuses on survivorship, now universally recognized as a crucial aspect of oncology care.

Survivorship Care-Meeting the Challenges

	Assistant Professor, Michigan State University College of Nursing

Colorectal cancer (CRC) is the third leading cause of cancer death among African Americans.

 The CRC mortality rate among African Americans is 29.8% compared with 19.5% among Caucasians.

 Overall, the incidence of CRC is 20% higher in African-American men and women, and the mortality rate is 45% higher, compared with whites.

CRC is preventable when detected early through colonoscopy done every 10 years or through fecal occult blood test (FOBT) done annually.

 However, CRC screening rates are well below 75%, and the rate among African Americans is 56% compared with 62% among Caucasians.

Previous research indicates that CRC screening interventions are modestly effective in increasing CRC rates among African Americans.

 Interventions such as mailings explaining the FOBT with a FOBT card, CRC screening reminders, printed materials and videos in waiting rooms, and healthcare provider recommendations have been methods cited to increase CRC screening rates among African Americans.3 Yet, CRC screening rates among African Americans remain virtually unchanged in the last 3 years.

What can oncology nurses do in busy clinics to increase CRC screening among African Americans? Having CRC screening materials that are visible, easily accessible, and specifically for African- American men and women that address barriers to screening, such as fatalism, CRC screening knowledge, and how to make an appointment has been shown to increase CRC knowledge and increase CRC screening adherence.

Past research suggests that delivering the CRC screening message in varying formats is important to increasing CRC screening.3 Traditional methods of delivering this message include mailings, leaflets, handouts, and videos. Newer methods of delivering CRC screening information include e-mail or links to websites or videos embedded in an e-mail or text message. In the future, there will be mobile apps that assist patients in making an informed decision about the type of CRC screening that is right for them. Delivering the CRC screening message in varying formats and at multiple time points may give oncology nurses additional opportunities to understand patient CRC screening values and preferences.

Other important factors in CRC screening include assessing the patient’s CRC screening values and preferences.

 Knowing if there is a family history of CRC, if a family member or friend had screening, and what the patient has heard about CRC screening can elucidate how the patient values CRC screening, and potential barriers or facilitators to screening.

		Table. Colorectal Cancer by the Numbers

Research has shown that people with a family history of CRC may be more likely to adhere to CRC screening guidelines.

 However, oncology nurses should note that patients with a history of cancer may require additional support, as studies indicate that their cancer screening rates are no different when compared to cancer screening rates of people who have never had cancer and no family history of CRC.

 Previous research has found that patients have definite preferences for CRC screening related to certain test features.

 These preferences are often not communicated to their physician, which can lead to the lack of or delay in CRC screening completion.

Acknowledging patient preferences may also reveal potential screening barriers. For example, if colonoscopy is chosen, will the patient have problems with transportation, the test prep, or taking a work day off? Oncology nurses have a great opportunity to match their patients’ values and preferences for CRC screening so that patients select a CRC screening test they want to do and can complete rather than doing nothing.

Family support has been shown to be an important factor in making an informed decision about CRC screening among African Americans.4 Assessing family support includes asking: Is there an important person who the patient will talk to about CRC screening, and does the patient know if that person will be supportive of CRC screening? These questions will give the oncology nurse an opportunity to provide additional information to patients that supports their decision to have CRC screening and that may aid patients when discussing their CRC screening decision with family and/or friends.

Oncology nurses and providers should incorporate one or more of these strategies to increase CRC screening in their practice: using CRC information specifically for African-American men and women delivered in varying formats and at multiple time points; learning about their patients’ CRC screening values and preferences, and assessing their patients’ family support for CRC screening.

Using these tools will increase the patient’s knowledge about CRC screening, support the patient’s CRC screening preferences, reduce potential barriers to CRC screening completion, and thus help in the effort to reduce the CRC health disparity among African Americans.

			American Cancer Society. Cancer Facts & Figures for African Americans 2013-2014. http://www.cancer.org/research/cancerfactsfigures/ cancerfactsfiguresforafricanamericans/cancer-facts-figures-africanamericans- 2013-2014. Accessed October 2, 2013.

			American Cancer Society. Colorectal Cancer Facts and Figures 2011-2013. http://www.cancer.org/acs/groups/content/@ epidemiologysurveilance/documents/document/acspc-028323.pdf. Accessed October 2, 2013.

			Powe BD, Faulkenberry R, Harmond L. A review of intervention studies that seek to increase colorectal cancer screening among African Americans. 

			Brittain K, Loveland-Cherry C, Northouse L, et al. Sociocultural differences and colorectal cancer screening among African American men and women. 

			Briss P, Rimer B, Reilley B, et al. Promoting informed decisions about cancer screening in communities and healthcare systems. 

			Rimer BK, Briss PA, Zeller PK, et al. Informed decision making: what is its role in cancer screening? 

			Rawl SM, Champion VL, Scott LL, et al. A randomized trial of two print interventions to increase colon cancer screening among first-degree relatives. 

			Schumacher JR, Witt WP, Palta M, et al. Cancer screening of long-term cancer survivors. 

			Hawley ST, Volk RJ, Krishnamurthy P, et al. Preferences for colorectal cancer screening among racially/ethnically diverse primary care patients. 

			National Cancer Institute. Surveillance Epidemiology and End Results. SEER Stat Fact Sheets: Colon and Rectum. http://seer.cancer.gov/ statfacts/html/colorect.html. Accessed October 2, 2013.

Colorectal cancer is the third leading cause of cancer death among African Americans. The CRC mortality rate among African Americans is 29.8% compared with 19.5% among Caucasians.

Improving Colorectal Cancer Screening Rates Among African Americans

The growing number of survivors of cancer in the United States today—nearly 14 million strong and rising&mdash;is indeed a cause for celebration. Yet with the survivor population projected to increase by more than 30% in the next decade, providers across the healthcare continuum face real and immediate challenges as they work to meet survivors’ needs when active cancer treatment ends.

This year has witnessed several leading cancer organizations issuing reports and guidelines underscoring the importance of survivorship care—continuing the national discourse inspired by the seminal 2005 report of the Institute of Medicine (IOM), 

Cancer Patient to Cancer Survivor: Lost in Transition

Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis

, the IOM argued that “cancer care is often not as patient-centered, coordinated, or evidence-based as it could be,”

 a situation exacerbated by a trifecta of an aging population, the increasing costs and complexity of cancer care, and shortages in the healthcare workforce.

And, earlier this year, both the American Society of Clinical Oncology and the National Comprehensive Cancer Network (NCCN) weighed in with recommendations and guidelines for achieving high-quality cancer survivorship care.

 In its first-ever set of survivorship guidelines, the NCCN presented a framework to manage potential long-term and latent side effects of cancer and treatment, with a focus on eight major issues: anxiety and depression, cognitive function, exercise, fatigue, immunization and infections, pain, sexual function, and sleep disorders. Survivorship care planning also features prominently in the patient-centered standards developed by the American College of Surgeons Commission on Cancer (CoC).

Also in the mix are the impact of full implementation of the Affordable Care Act and other health system realignments stemming from the trend toward practice consolidation and smaller practices affiliating with larger cancer centers.

“There is a growing awareness and certainly an acknowledgment of the importance of survivorship as a formal period of care,” noted Mary McCabe, RN, MN. McCabe directs the Cancer Survivorship Initiative at Memorial Sloan-Kettering Cancer Center (MSKCC) in New York City, where she has been responsible for developing and implementing comprehensive programs for cancer survivors over the last 10 years. She also served as a member of the 2013 IOM report committee.

McCabe explained that at the beginning, her institution spent a lot of time thinking about who might be the most appropriate provider of survivorship care for patients treated for adult-onset cancers, and her steering committee concluded that the nurse practitioner (NP) is especially well-situated and trained for this role.

NPs and in some cases, physician assistants (PAs), currently lead tumor-specific clinics for survivors in such areas as bone marrow transplant, breast, colorectal, thoracic, and urologic cancers. Each clinic is designed to address such issues as screening and preven-tion of second cancers, monitoring for late- and long-term treatment effects, health promotion activities, and fostering communication with the patient’s primary care provider.

The clinics are not freestanding, but rather integrated alongside the patient’s original care team. “Over the last few years, we have been growing this model throughout the institution, and now take care of over 10,000 cancer survivors at the cancer center,” McCabe noted.

She acknowledges that given the size of MSKCC, this tumor-specific clinic model used there and at some other large cancer centers will not be feasible for smaller hospitals and practices where NPs and other practitioners will see cancer survivors with diverse diagnoses. Furthermore, in rural areas, research has shownthat meeting the care needs of the approximately 2.8 million rural cancer survivors can be especially challenging.

 All this will require additional skills and training on the part of clinicians across the care spectrum.

For newer and emerging survivorship care programs, many resources and models are available (

). McCabe noted that at MSKCC, they have purposefully worked to set up their survivorship website so that it can be used as a resource for other healthcare professionals planning their own survivorship care programs. She also is a principal investigator (with Marcia Grant, RN, DNSc, professor and director of the Division of Nursing Research and Education at City of Hope in Duarte, California) on a 5-year grant from the National Cancer Institute to train nurses working with cancer survivors who are transitioning from active treatment to survivorship care via training workshops designed for nurses from all cancer healthcare settings, including private practice offices and small community cancer clinics.

In all this, reimbursement looms large. “Thinking about how we provide the most appropriate and efficient services to cancer survivors is one of the issues that we’ve been giving a lot of thought to,” said McCabe. Fortunately, not all cancer survivors need the intensive services that, for example, a bone marrow transplant patient might need, she explained. “We want to make sure that we take rather scarce resources and use them effectively.”

McCabe said that they are looking at risk-based approaches to care that factor in the types of services patients may need, based on their risks for recurrence and long- and late-term effects, to help guide the decision-making. “It used to be that we said all of our cancer patients need to stay with us for life. I think we have a better understanding of people’s risk of problems down the road and also their risk of recurrence,” she said.

			National Cancer Survivorship Resource Center 

			National Coalition for Cancer Survivorship 

http://www.mskcc.org/cancer-care/survivorship

			Association of Community Cancer Centers 

She advocates a rehabilitation model approach that includes helping patients to leverage resources available in their own communities.

Whereas the physician visit is reimbursable, McCabe noted, it varies by state whether the NP- or PA-clinic model will be. Understanding the reimbursement landscape in their localities is something providers designing survivorship programs need to establish early on.

Despite the fact that MSKCC’s survivorship program is a relatively mature one, McCabe said that her institution still faces ongoing challenges associated with the changing landscape of healthcare. “We’ve been thinking about this for a long time,” she said, “and we’re at a point now where we’re increasingly interested in metrics: How do we evaluate what we’ve been doing? How do we know what has been really working or not?”

Providers and patients of course would like payers to reimburse for survivor care services. “We know that they are extremely important,” said McCabe, “not only for cancer, but for a whole set of diseases in terms of prevention and risk reduction.”

“I would like to think that over time, people are enlightened that preventing disease is better than treating disease.”

. Washington, DC: National Academies Press; 2005. http://iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-Survivor-Lost-in-Transition.aspx. Accessed October 7, 2013.

. Washington, DC: National Academies Press; 2013.http://www.iom.edu/Reports/2013/Delivering-High-Quality-Cancer-Care-Charting-a-New-Course-for-a-System-in-Crisis.aspx. Accessed October 7, 2013.

			McCabe MS, Bhatia S, Oeffinger KC, et al. American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care. 2013;31(5):631-640.

			National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines: Survivorship. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#survivorship. Accessed October 7, 2013.

			Weaver KE, Palmer N, Lu L, Case LD, Geiger AM. Rural-urban differences in health behaviors and implications for health status among US cancer survivors. 

Feature Story

The growing number of survivors of cancer in the United States today-nearly 14 million strong and rising-is indeed a cause for celebration. 

Providing Coordinated, Patient-Centered Survivorship Care

Selecting the optimal treatment for postmenopausal patients with hormone receptor (HR)-positive metastatic breast cancer (MBC) remains a challenge, given a preponderance of data for several approved therapeutics. This challenge has been a topic of interest in interviews with oncology leaders, as well as in a 

One facet of the discussion, entitled “Metastatic Breast Cancer Treatment Challenges,” featured managing the side effects associated with mTOR inhibitors. The advent of novel therapies has heightened the need for clinicians to be well-informed on potential adverse events (AEs) associated with these agents to help ensure that patients adhere to their regimens and complete treatment.

The FDA first approved the mTOR inhibitor everolimus (Afinitor) in 2009 for patients with advanced renal cell carcinoma after treatment failure with sorafenib or sunitinib. Everolimus also is approved for the treatment of advanced pancreatic neuroendocrine tumors that are unresectable, locally advanced, or metastatic.

Last year the FDA approved everolimus for the treatment of HR-positive, HER2-negative breast cancer, when given in combination with the aromatase inhibitor (AI) exemestane, in previously treated postmenopausal women, based on findings of the BOLERO-2 trial.

This randomized, international, phase III trial compared everolimus and exemestane with placebo plus exemestane in 724 patients with HR-positive advanced breast cancer who had recurrence or progression while receiving previous therapy with a nonsteroidal AI.1 An interim analysis of the study by local investigators found that median progression-free survival (PFS) in the everolimus-plus-exemestane combination therapy arm (n = 485) was 6.9 months compared with 2.8 months in the placebo-plusexemestane arm (n = 239). A separate central assessment also found that median PFS was 10.6 months in the everolimus arm and 4.1 months in the control arm.1 These findings were in line with two earlier studies of everolimus with antiestrogen therapy in HR-positive breast cancer.

Although everolimus is generally well-tolerated, 23% of patients in the combination therapy group experienced serious AEs, 11% of which were attributed to study treatment, compared with 12% in the exemestane- alone cohort, with 1% attributed to study treatment. The most common grade 3/4 AEs in the combination therapy group versus the exemestane-placebo group were stomatitis (8% vs 1%, respectively), anemia (6% vs <1%), and pneumonitis (3% vs 0%).1 Across the everolimus studies, AEs most commonly reported have been stomatitis, rash, infection, noninfectious pneumonitis, and hyperglycemia.

Stomatitis is one of the most common and troublesome of the mTOR-associated side effects and is a known marker of mTOR inhibition, noted Peer Exchange panelist Hope S. Rugo, MD, professor of Medicine, and Director of the Breast Oncology Clinical Trials and Education Program at the University of California- San Francisco Comprehensive Cancer Center. “BOLERO looked very carefully at toxicity,” she said, adding that addressing stomatitis has been an area of particular interest for clinicians.

“Grade 3 stomatitis was seen in 8%; interstitial pneumonitis was uncommon, and you can generally manage that,” said Rugo. She said that stomatitis is more difficult, because it can lead to anorexia, weight loss, and fatigue. “It is all interrelated.”

In a recent interview, José Baselga, MD, PhD, physician- in-chief at Memorial Sloan-Kettering Cancer Center in New York City, stressed that it is very important for clinicians to be aware of the features of mTOR inhibitor— associated stomatitis (mIAS). “It’s not the same kind of mucositis that we see with chemotherapy. It occurs very early, within the first 4 weeks—actually sometimes within the first 2 weeks&mdash;and it can evolve rapidly into grade 3 mucositis, and that’s the mucositis which doesn’t allow you to eat or drink well. Once the patient has grade 3 mucositis, it can last a long time.”

The oncology nurse is well positioned to monitor AEs to avoid dose interruptions or reductions, as well as treatment discontinuation,

 and intervention strategies to help ameliorate mIAS should begin at the first sign of mouth discomfort. These include good oral hygiene; avoiding spicy, acidic, hard, and hot foods and beverages; using mildly flavored toothpaste, and cleansing with baking soda rinses.

Mouthwashes can be very effective, agreed Rugo and panelist Joyce O’Shaughnessy, MD, co-director, Breast Cancer Research, Texas Oncology/US Oncology, Baylor Charles A. Sammons Cancer Center, in Dallas, Texas. O’Shaughnessy recommends the use of a steroid mouthwash as a preventive option. Rugo said that at her institution, they began using a steroid mouthwash as a preventive, along with an antibiotic. “When you use the steroid mouthwash, people don’t get mouth sores, so that was a big improvement, for us.”

Adam M. Brufsky, MD, Peer Exchange moderator and professor of Medicine and associate chief, Division of Hematology/Oncology at the University of Pittsburgh, noted that the manufacturer of everolimus (Novartis) has been very proactive with respect to the importance of side effect management—alerting health professionals that there will be “a different set of side effects for the oncologist who usually manages hormone receptor—positive metastatic breast cancer.”

He added that approximately 10% of his patients will stop treatment due to the stomatitis. Shaughnessy again stressed the effectiveness of the mouth rinses. “It’s night and day—it will go away,” she said, urging clinicians to emphasize this with patients.

The manufacturer’s recommendations for patients with grade 3 stomatitis include topical analgesic mouth treatments (ie, benzocaine, butyl aminobenzoate, tetracaine hydrochloride, menthol or phenol) with or without topical corticosteroids (ie, triamcinolone oral paste).

There has been growing enthusiasm and awareness of the addition of everolimus into the endocrine therapy combination strategy, as well as additional uptake of this therapeutic approach in clinics, noted Howard A. Burris, III, MD, chief medical officer and executive director of the Drug Development Program at the Sarah Cannon Research Institute in Nashville, Tennessee. He also cited stomatitis as the mTOR inhibitor’s principal toxicity. “The toxicities of diarrhea, rash, and glucose issues have been sporadic and fairly easy to manage,” he said in an interview.

Burris concurred with the panelists that the oral preparations, including topical formulations and mouthwashes, that nurses use have been effective. For patients who get substantial grade 3 stomatitis, he said “the first move is to simply take a break from the therapy—a washout period of 3 to 7 days is very effective.” Then a decision can be made to restart the therapy at that dosage or drop down from 10 mg to 5 mg, he said.

“The oncology nurse in my practice and at Sarah Cannon in general is key to this,” Burris explained. “The nurses do most of the education and most of the ‘walking’ with the patient out through the therapy. The nurses drive that from the very beginning; they’re the ones who are staying in touch with the patient and managing it.”

Baselga added that fatigue and hyperglycemia are other side effects to be aware of following treatment with everolimus, a point also highlighted by panelist Andrew D. Seidman, MD, professor of Medicine at Weill-Cornell Medical Center, and attending physician, Breast Cancer Service, Memorial Sloan-Kettering Cancer Center.

The management of mTOR inhibitor—induced hypertriglyceridemia is a novel undertaking for some breast oncologists, Seidmen said. Fortunately, downstream effects, such as pancreatitis, do not commonly manifest, but the management of this side effect, as well as hyperglycemia, warrants the awareness of clinicians.

To avoid unwarranted side effects and optimize response to treatment, researchers are exploring correlative markers that predict response to mTOR inhibition. A few studies examining these markers were presented at the 2013 ASCO Annual Meeting, Rugo noted. Markers are intriguing, added panelist Edith A. Perez, deputy director of the Mayo Clinic Cancer Center in Jacksonville, Florida. However, it is important that large data sets are utilized to identify and validate new markers, particularly to avoid inaccurate findings.

Clinical awareness and identification of problems early for patients being treated with mTOR inhibitors will improve patient outcomes and quality of life. As further trials exploring everolimus in breast cancer are completed, such as BOLERO-3, the management of these unique side effects grows more important, Brufsky concluded.

			Baselga J, Campone M, Piccart M, et al. Everolimus in postmenopausal hormone-receptor-positive advanced breast cancer. 

			Baselga J, Semiglazov V, van Dam P, et al. Phase II randomized study of neoadjuvant everolimus plus letrozole compared with placebo plus letrozole in patients with estrogen receptor-positive breast cancer. 

			Bachelot T, Bourgier C, Cropet C, et al. TAMRAD: a GINECO randomized phase II trial of everolimus in combination with tamoxifen versus tamoxifen alone in patients (pts) with hormone-receptor positive HER2 negative metastatic breast cancer (MBC) with prior exposure to aromatase inhibitors (AI). Presented at: the 33rd Annual San Antonio Breast Cancer Symposium; December 8-12, 2010; San Antonio, TX . Abstract S1-6. 

			Peterson ME. Management of adverse events in patients with hormone receptor-positive breast cancer treated with everolimus: observations from a phase III clinical trial. 

			Pilotte AP, Hohos MB, Polson KM, et al. Managing stomatitis in patients treated with Mammalian target of rapamycin inhibitors. 

			Afinitor (everolimus) [prescribing information]. East Hanover, NJ: Novartis Pharmaceuticals Corp; 2012.

Selecting the optimal treatment for postmenopausal patients with hormone receptor (HR)-positive metastatic breast cancer (MBC) remains a challenge, given a preponderance of data for several approved therapeutics

Managing mTOR Inhibitor Side Effects in Breast Cancer

Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors. They also provide data for large-scale observations and measurement of outcomes of prevention, treatment, and measures of quality of care. Currently, the National Program of Cancer Registries collects data on cancer cases occurring among 96% of the US population.

	A nurse-initiated psychosocial cancer registry can provide insight about quality of life (QOL) in patients with cancer.

 Evidence about QOL, as perceived by the patient, is a concern of all clinicians but is of particular importance to the bedside nurse. There has been a great deal of study of QOL of cancer patients; however, most of these reports focus on narrow or limited samples and typically one specific cancer type. Having access to a registry that enrolled patients with diverse cancer types and collected QOL data could be very useful to practicing nurses.

	Before deciding to use a registry, it is important to know the characteristics of the patients enrolled. Data for our registry were collected in an outpatient clinic at an NCI-designed Comprehensive Cancer Center and included all cancer diagnoses and stages. Among the inclusion criteria were >18 years of age, ability to comprehend the English language, having a new diagnosis of cancer, and receiving ongoing care at the cancer center. Exclusion criteria were cognitive impairment or immediate referral for a bone marrow/ stem cell transplant, because much of this type of treatment is conducted in the inpatient setting.

	Demographic and clinical data were gathered at enrollment, and QOL was measured using several questionnaires administered at enrollment, 3 months, and 9 months.

	Patient demographic data included education level, employment status, and income. Cancer demographics were gathered for tumor type and staging and for the patient’s history of cancer and ECOG performance status.

	The project was approved by the hospital’s Institutional Review Board. Of the 410 participants in this registry, the majority were married (64%), Caucasian (76%), and female (57%); the mean age was 59.6 (range, 18-90 years).

	Several instruments were used in this registry to capture data about various aspects of QOL, including mood state, functional status, and spiritual well-being (

). Measuring several dimensions of QOL is important in designing a registry so that it can serve a variety of purposes. For example, when planning to initiate or improve supportive care services by increasing access to palliative care or changing social services staffing,it would be useful to know if services should be targeted to patients with particular demographic or clinical characteristics.

			Table 1.Second-Generation Proteasome Inhibitors

						Eastern Cooperative Oncology Group (ECOG)

						Functional Assessment of Cancer Therapy-General Scale (FACT-G)

						Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being Scale (FACIT-Sp)

Registries, large databases of patient information collected in a systematic, standardized fashion, most often focus on biologic measures, such as pathology, radiology, and laboratory results, to track incidence and prevalence of disease as well as causative factors.

The Benefits for Nurses of Using Psychosocial Cancer Registry Data

		Lisa Schulmeister, RN, MN, APRN-BC, OCN®, FAAN

Oncology Nursing Consultant, Adjunct Assistant Professor of Nursing

		Louisiana State Health Sciences Center in New Orleans, Louisiana

It’s been well established now that cancer survivorship begins on the day of diagnosis. Despite the positive spin that this presents for patients, families, friends, and coworkers, most people still associate cancer survivorship with completing treatment and getting on with life.

With so much focus on the person with cancer, the other cancer survivors often are overlooked or under-recognized. These other cancer survivors are the spouses and children of people who have been diagnosed with cancer, as well as “extended family,” which may include friends, coworkers, and anyone else with a close relationship to the family. To one degree or another, all of these people are “along for the ride” during the cancer journey.

I’m always humbled when I hear of the office staff that donates unused sick time to a coworker being treated for cancer. This gesture of support goes such a long way when the person with cancer is not only grappling with treatment, but is worried about job security as well. Coworkers also are known for helping out with meals and transportation and will send get well wishes during treatment.

Upon return to work, though, many people report that supervisors and coworkers treat them differently and view them not as cancer survivors but as people who have just finished grueling treatment and need an easier, less stressful job. Many have reported being overlooked for job promotions and advancement. This may be due in part to employers’ lingering concerns about physical endurance, but also may be related to unfounded concerns about the potential for cancer recurrence.

Probably the best thing that employers can do upon return to the workplace (or continuation of work while receiving cancer treatment), is to let employees confer with their healthcare providers and decide what job limitations, if any, are necessary. In other words, the employee should be making these decisions, not the employer.

Cancer survivorship also poses challenges for immediate family members. Spouses, children, and parents of cancer survivors have reported feeling like they, too, underwent cancer treatment. As one husband put it, although he did not get in the chemotherapy chair or lie down on the radiation therapy table, he felt like he underwent treatment himself since he was with his wife every step of the way. Another spouse said that being the wife of a cancer survivor is a full-time job and described how she was now handling everything from mowing the lawn to dealing with the insurance company. And when the husband of a friend of mine was diagnosed with cancer and unable to work, tensions grew over time as he became increasingly dependent on her and she realized that she was now his nurse and no longer his wife.

Fortunately, there are many resources for these other cancer survivors. However, linking those in need with available resources doesn’t always happen, as the focus of office visits and chemotherapy treatments often is the patient. I’ve included assessment of the other cancer survivors in my work and hope that you do as well. I’ve also asked patients who they are close to, and ask how these individuals are coping with the patient’s treatment and needs. Several patients have been surprised that I’ve asked this, and a few have admitted that they haven’t given much thought about the impact of cancer and its treatment on anyone but themselves.

Patients report that the family dynamic changes, sometimes for better and sometimes for worse, when cancer treatment has completed. This step in the cancer journey is finally getting its due recognition. Many patients and their families describe this time as the “new normal.”

As the National Cancer Institute (NCI) notes, each caregiver has a unique response to having had a loved one with cancer. The NCI has published a booklet titled 

Facing Forward: When Someone You Love Has Completed Cancer Treatment

 to inform families and loved ones about common feelings and reactions that many caregivers have had after treatment ended. It’s a wonderful resource for the other cancer survivors.

Nurse's Notes

It's been well established now that cancer survivorship begins on the day of diagnosis. Despite the positive spin that this presents for patients, families, friends, and coworkers, most people still associate cancer survivorship with completing treatment and getting on with life.

October 2013

Survivorship Care-Meeting the Challenges

Improving Colorectal Cancer Screening Rates Among African Americans

Providing Coordinated, Patient-Centered Survivorship Care

Managing mTOR Inhibitor Side Effects in Breast Cancer

The Benefits for Nurses of Using Psychosocial Cancer Registry Data

The Other Cancer Survivors