Cancer survivorship care: Implications for primary care advanced practice nurses.

Cancer survivorship care: Implications for primary care advanced practice nurses

Abstract: Cancer survivors are at risk for recurrences, new cancers, and late and long-term effects of cancer treatments. Health promotion and management of comorbid conditions remain a standard of care for cancer survivors. Nurse practitioners should collaborate with oncology specialists using a shared-care model in delivering survivorship care.

By Layne Cox Weaver, MSN, RN, NP-C; Ann Jessup, PhD, RN, FNP-BC; and Deborah K. Mayer, PhD, RP, AOCN, FAAN

ancer survivorship care (CSC) is a pressing healthcare issue for many reasons. Advanced practice nurses specializing in oncology services currently deliver cancer care in oncology practices, and many lead the delivery and coordination of care in survivorship clinics.1 For their colleagues in primary care, however, family and adult nurse practitioners (NPs) have minimal experience in cancer care and may need education and guidance to incorporate CSC into their practices. For example, cancer survivors may present to their primary care providers with complaints that are sequelae from cancer treatments, such as arthralgia, fatigue, hearing loss, cough, or forgetfulness.2 Identifying these symptoms as sequelae or late effects of cancer treatment can guide the workup and management of symptoms. Therefore, the purpose of this article is to provide an overview of survivorship care and identify resources for healthcare providers on this topic.

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■ Background The National Cancer Institute (NCI) defines a cancer survivor as follows: “An individual is considered a cancer survivor from the time of diagnosis through the balance of his or her life. Family members, friends, and caregivers are also

impacted by the survivorship experience and are included in this definition.”3 Cancer prevalence in the United States has increased from 3 million in 1971 to 11.9 million in 2008, representing approximately 4% of the U.S. population.3 A greater increase is anticipated as the population ages; currently, 60% of survivors are 65 years of age or older. By 2050, it is projected that the absolute number of people age 65 and over who are diagnosed with cancer will double.4 ■ A chronic illness Decades ago, a cancer diagnosis was considered a death sentence. Today, 67% of adults with cancer will be alive in 5 years, and 77% of childhood survivors will be alive in 10 years.3 Of the 11.9 million survivors alive today, 14% were diagnosed 20 years ago.3 Among today’s survivors, the most common cancer sites represented include female breast (22%), prostate (20%), colorectal (9%), and gynecologic (8%).4 These numbers are noteworthy because a patient with a history of cancer may experience long-term sequelae from the primary cancer or from its treatment and is at higher risk than the general population for new cancers.4,5 Wagner’s chronic care model was created to improve the outcomes for patients with chronic diseases.6 The defining

Key words: cancer surveillance, cancer survivors, health promotion, survivorship care plan

1 The Nurse Practitioner

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features of primary care–continuity, coordination, and comprehensiveness–are central themes that make this model successful. Active, informed patients who can self-manage and healthcare teams that are collaborative and proactive are also necessary to make this model successful.7 Shared care between primary care providers and specialists has proven to be the defining factor that improves outcomes using this model. Shared-care models have been used in CSC and have been shown to deliver the highest quality of cancer care. A 5-year study of colorectal cancer survivors demonstrated that when oncologists became less involved in survivor care, cancerrelated screening decreased significantly. Similarly, survivors who saw only primary care providers received only lipid screening and bone densitometry. In contrast, when survivors saw both primary care providers and oncologists, they were most likely to receive flu vaccines and cancer screenings in addition to lipid screening and bone densitometry. The variation in care led authors to conclude that survivorship care plans should explicitly outline the roles of primary care providers and oncologists in sharing care for survivors.8 Positive outcomes using shared-care models have also been demonstrated in patients with breast and colon cancers as well as in all cancers diagnosed in older adults.8-17 In addition, highest quality outcomes using shared care are well documented in the care of childhood cancer survivors.18 In spite of convincing research using shared-care models, there remains a lack of clarity regarding who should assume which components of CSC.19-21 ■ Cancer survivors have unique needs Every cancer patient looks forward to completing treatment. Treatment completion, however, is the point at which the new journey of survivorship begins. Cancer treatments may result in complex and long-term health effects, creating unique healthcare needs that are poorly understood in adult survivors. As people live longer with cancer, research continues to unravel the multidimensional needs of survivors. A 2003 study supported by the MD Anderson Cancer Center demonstrated health changes experienced by cancer survivors that affected their overall health.22 Trends of site-specific and population-specific symptoms were recognized, for example, younger survivors and men who experienced arthritis and osteoporosis. Hodgkin disease survivors experienced thyroid and lung problems. Lymphoma survivors reported memory loss that improved with time, while other effects such as arthritis and cataracts worsened over time. Overall, the group reported good health, but suffered problems that were different from the general population. 2 The Nurse Practitioner

Researchers concluded that further studies are needed to describe the health needs of cancer survivors. Answering that need, the Institute of Medicine (IOM) published the report From Cancer Patient to Cancer Survivor: Lost In Transition, which has led the way in describing the unique needs of cancer survivors. The report describes physiologic and psychosocial consequences of cancer and its treatment as substantial and varied.4 Some survivors experience few long-term effects, while others suffer disabling and permanent symptoms. This variation calls for individualized care. Detailed knowledge of cancer type and treatments received, coupled with an understanding of potential sequelae, are required in order to deliver the quality of care recommended by the IOM. This presents a challenge to nononcology providers who do not possess such specialized information. ■ CSC is multidimensional In keeping with Wagner’s chronic care model, survivorship care should respond to the psychosocial, physical, and economic issues surrounding cancer from the time of diagnosis through the end of life.23 Included are issues that relate to the ability to obtain healthcare and follow-up treatment. Follow-up treatment involves critical components of monitoring for late effects of treatment and second cancers, surveying for recurrence, and promoting the highest quality of life for each individual.24 The IOM has identified four essential components of quality CSC: “prevention and detection of new and recurrent cancer; surveillance for cancer spread, recurrence, or second cancers; intervention for consequences of cancer and its treatment (for example, medical problems, such as lymphedema and sexual dysfunction; symptoms, including pain and fatigue; psychological distress experienced by cancer survivors and their caregivers; and concerns related to employment and insurance); and coordination between specialists and primary care providers to ensure that all needs of survivors’ health are met (for example, health promotion, immunizations, screening for both cancer and noncancerous conditions, and the care of concurrent conditions).”4 The IOM’s report recommends that these components be addressed for every survivor in a CSC plan led by the treating oncologist. The care plan is intended to summarize the site and stage of cancer at diagnosis, treatments received, related problems along the way, and a the promotion and maintenance of physical, mental, and social well-being throughout survivorship.4



■ State of the science of CSC CSC has evolved over the years (see Evolution of CSC). Attention to survivorship began in 1986 with the development of the National Coalition for Cancer Survivorship (NCCS). The goal of this advocacy group was to transform the view that cancer patients were “victims” into considering them survivors. Recognition of cancer survivors as a population who should be protected from discrimination occurred in 1990 when the Americans with Disabilities Act included cancer survivors under its protection. CSC gained political attention when the Cancer Leadership Council was established in 1993 to address public policy issues in cancer care and research leading to the First National Congress on Cancer Survivorship in 1995. Survivorship research was boosted with the creation of the NCI Office of Survivorship in 1996. Also in 1996, NCCS published the first report to address cancer survivorship from the survivor’s perspective. Public health strategies were added to CSC and research when the CDC and the Lance Armstrong Foundation (now the LIVEStrong Foundation) cosponsored the 2004 National Action Plan for Cancer Survivorship: Advancing Public Health Strategies. Continuing with advocacy efforts, NCCS created the Cancer Survivor Toolbox, a free audio program that helps cancer survivors develop skills for understanding the challenges of their illness and advocating for themselves. Most significantly, the IOM released its landmark 2005 report From Cancer Patient to Cancer Survivor: Lost in Transition, which continues to assist today’s health professionals and legislators in understanding the unique needs of cancer survivors.4 It also makes recommendations to oncology professionals regarding ways to assist survivors in making a smooth transition from active treatment to follow-up care. In addition, the CDC added four questions to the 2009 and 2010 Behavioral Risk Factor Surveillance System (BRFSS) pertaining to cancer survivorship. The BRFSS is a population-based surveillance system that tracks health conditions and risk behaviors in each state. Respondents will answer at least one of the four questions. States may also choose to ask questions from the Cancer Survivorship Module, which will serve to measure follow-up care, treatment plans, and pain management. Also, CDC researchers are working with the California Cancer Registry and the Public Health Institute to conduct a survey with questions that relate to prevention behaviors, early detection practices, and quality of life for colorectal cancer survivors. These efforts will help inform further development of programs that address the needs of cancer survivors. More recent developments include 2010 legislation that expands healthcare coverage and eliminates exclusion of 3 The Nurse Practitioner

those with preexisting conditions, such as cancer, in the Patient Protection and Affordable Care Act. Journey Forward, a computer program that assists oncology specialists to compile survivorship care plans, was created in keeping with the IOM report recommendations. Also, the National Comprehensive Cancer Network (NCCN) released Guidelines for Patients to assist breast and lung cancer survivors in navigating through the maze of treatment options and to educate them about adverse reactions and follow-up care. ■ Evidence-based guidelines Evidence-based guidelines for CSC are rapidly making their way into published literature. The NCCN, the American Society of Clinical Oncology (ASCO), and the MD Anderson Cancer Center have published CSC guidelines for common cancers. (See Established clinical guidelines for survivorship care.) Evidence-based guidelines for childhood survivors are well defined and serve as a model for further development of adult guidelines. Passport for Care (PFC) is the model for the establishment of comprehensive evidence-based guidelines for adult survivors. Seventy-five percent of childhood survivors are living 10 years after diagnosis, compared to 68% of survivors ages 20 to 49, and 56% of people over 50.3,25 Given higher childhood survival rates, PFC was created to guide both patients and their primary care providers through challenges they are likely to face as adults. To further clarify the need, 1 in 250 adults in 2010 was a childhood cancer survivor.26 Although that is only 0.4% of the adult population, 62% of that population have at least one chronic condition, and 33% have a life-threatening condition. Therefore, it is likely that childhood survivors make up a larger percent of the population who visit a primary care provider for medical treatment.26 The long-term goal of the PFC project is to develop a national resource that will serve all cancer survivors— children and adults.27 Currently, it is an Internet-based tool (www.survivorshipguidelines.org) used by 10 clinics in the United States and available to all Children’s Oncology Group (COG) institutions. To highlight noteworthy features, it provides access to survivors’ medical information and guides long-term follow up for screening for late effects and for monitoring cancer-related, chronic medical conditions. A Guidelines Generator assembles COG guidelines according to each survivor’s treatment history. An end-of-treatment care summary created by the treating institution can be accessed and used to individualize treatment. Education resources are customized based on the type of cancer and treatment received and are accessible to primary care providers.



Evolution of CSC 1986 Formation of NCCS. Advocacy group. Goals: transform the view of cancer patients from “victims” to “survivors,” create an organized platform in which the full spectrum of survivorship issues relating to living with cancer, through and beyond the diagnosis could be dealt1 1990 Americans with Disabilities Act includes cancer survivors under its protection1 1993 Cancer Leadership Council established to address public policy issues in cancer1 1995 First National Congress on Cancer Survivorship CanSearch website launched by NCCS. Directs users to credible, online resources for cancer treatment and survivorship care1 1996 NCI established Office of Cancer Survivorship. Goals: Encourage survivorship research2 NCCS published Imperatives for Quality Cancer Care: Access, Advocacy, Action and Accountability, the first report to address quality cancer care from the survivor’s perspective1 National Cancer Policy Board established to evaluate the U.S. cancer program and related policy making1 1997 The MARCH…Coming Together To Conquer Cancer. Grassroots awareness campaign calling for better funding for cancer research and access to quality care. Resulted in a 16% increase in NCI funding1 2004 NCCS launched Cancer Advocacy Now! Assures that cancer survivors have a voice1 CDC and Lance Armstrong Foundation cosponsor National Action Plan for Cancer Survivorship: Advancing Public Health Strategies3

2005 NCCS creates The Cancer Survivor Toolbox. Free audio program helps cancer survivors develop skills for understanding challenges of their illness. Information for health professionals teaches how the Toolbox can be used with patients1 IOM report From Cancer Patient to Cancer Survivor: Lost in Transition 4 2006 NCCS drafts Comprehensive Cancer Care Improvement Act. Legislation that proposes the advancement of a system of integrated care and improved communication between patients and healthcare teams regarding treatment options and follow-up care. Policy status still in review1 2009 CDC Behavioral Risk Factor Surveillance System: Adds questions related to cancer survivorship and Cancer Survivorship Module to be used at individual states’ discretion5 2010 Patient Protection and Affordable Care Act. Legislation that expands healthcare coverage, eliminates exclusion of those with preexisting conditions—especially important to cancer survivors and all people with chronic conditions6 Journey Forward. Computer program that assists oncology specialists to create survivorship care plans based on American Society of Clinical Oncology treatment and follow-up guidelines for breast and colon cancer. Provides all IOM recommendations for quality comprehensive care. Plans for guides with other types of cancers are being developed. Free to oncology practices1 NCCN releases Guidelines for Patients. Assists breast and lung cancer survivors in navigating through the maze of treatment options and educates about adverse reactions and follow-up care. Since the initial release, additional guidelines that have been released include guidelines for colon, prostate, melanoma, and ovarian cancer.7

Sources: 1. National Coalition for Cancer Survivorship www.canceradvocacy.org

5. Center for Disease Control and Prevention www.cdc.gov/cancer/survivorship/what_cdc_is_doing/brfss.htm.

2. National Cancer Institute dccps.nci.nih.gov.libproxy.lib.unc.edu/ocs/history.html.

6. United States Department of Health and Human Services www.healthcare.gov/law/timeline/index.html#event7-pane.

3. Centers for Disease Control and Prevention www.cdc.gov/cancer/survivorship/pdf/overview.pdf.

7. National Comprehensive Cancer Network www.nccn.com/news/315-nccn-announces-new-treatment-guidelinesfor-patients.html.

4. Institute of Medicine www.iom.edu/Reports/2005/From-Cancer-Patient-to-Cancer-SurvivorLost-in-Transition.aspx.




Established clinical guidelines for survivorship care NCCN www.nccn.org/professionals/physician_gls/f_guidelines.asp • Cancer Survivorship Guidelines • Surveillance Guidelines • Follow-up Recommendations – Risk Factors for Recurrence – Monitoring for Late Effects • Supportive Care • Detection, Prevention, & Risk Reduction • Distress Management Guidelines • Tool: 5-minute Distress Thermometer ASCO www.asco.org • Surveillance Guidelines • Tools: Surveillance Flow Sheets, Risk Reduction Discussion Guide for Breast Cancer • Clinical Evidence Review • Cancer Portals/Education Books Cancer.Net www.cancer.net • Survivorship Tab contains Late Effects • Tools: Templates for Survivorship Care Plans, Care Plans MD Anderson Cancer Center www.mdanderson.org/patient-and-cancer-information/ cancer-information/cancer-topics/survivorship/followupcare/index.html • Long-term Follow-up Guidelines • Cancer Survivorship Clinics tab • Dealing with Cancer Treatment

■ Applying the state of the science in primary care Primary care providers should be involved throughout the care continuum. The journey of cancer survivorship often begins in the primary care office when a patient is told he or she has cancer or that further tests are needed to clarify screening results. Unfortunately, too often, the patient and the primary care provider lose touch once patients are referred to oncologists or other specialists for further testing or treatment.28 As stated earlier, professional roles and expectations between the primary care provider and specialist are not well defined between themselves or with their patients. Often, the result is that patients do not know which provider to call for various health problems, and primary care providers may be uncertain where to step in. When primary care 5 The Nurse Practitioner

providers and oncology specialists clarify their respective roles in CSC, quality of survivorship care will increase dramatically. Primary care providers must be proactive in maintaining contact with patients who become cancer survivors. Active cancer treatment can last months to years, and sometimes, for the life of the survivor. Meanwhile, patients continue to need preventive care, such as flu and pneumonia vaccines; counseling for healthy lifestyle behaviors; screening for chronic disease; and comorbidities management.29 There are many aspects of care that primary care providers can provide to assist patients during the confusing journey that lies before them. Education and anticipatory guidance have the potential to decrease confusion and empower cancer survivors who are beginning their journey. For example, providers should encourage patients to keep a written record or journal of their cancer care from the time of diagnosis onward. Important details to include are the type and stage of cancer, names of treatments and all specialists involved, names of drugs, adverse reactions and their management, and names of all facilities where procedures and tests were performed.24 Although care summaries containing this information should be expected from oncology professionals, in the event that it is not received, such a journal will be helpful when patients return to their primary care provider. Some patients are detailed historians, while others are not able to give details of treatments that are necessary in order to monitor for recurrence and late effects.30 Cancer patients can quickly become psychologically and physically overwhelmed due to both the gravity of the cancer diagnosis and adverse reactions of treatments. Primary care providers can offer early assistance by encouraging survivors to identify a support person to record information, make phone calls, and ask questions. As stated earlier, provider role confusion is an unfortunate issue between primary care providers and oncologists and is also troubling for patients. To decrease role confusion, primary care providers should remind their patients that although the cancer will be treated by a specialist, the primary care provider will continue to manage comorbidities and provide health promotion and prevention.31 This reminder should occur at the time the diagnosis is delivered or when the patient is told that further tests are warranted. Such an intervention may be the impetus that prevents patients from becoming isolated from their primary care providers with whom they may have long-standing relationships. A recent study showed an increase in clarity among survivors regarding follow-up care when they had “follow-up care



discussions” with their oncology specialist. Survivors gained a better understanding of who should be doing what.19 Survivors also need information that will help explain new and unfamiliar terms. Providers do a great service when they direct patients to one or two quality cancer resources, especially on the Internet, that help explain terms and navigate them to needed services. Financial strain is another stressor for many cancer survivors. Some may lose weeks to months from work and not realize that assistance is available or how to access it.32 Primary care providers can be instrumental in letting survivors know early on that social workers, NPs, and clinical nurse specialists are knowledgeable about financial and social resources, and that they are often employed in cancer centers where treatments are administered. Calling patients within a month of diagnosis, and periodically after treatment begins, is a way to inquire about such needs and maintain patient–primary provider contact. ■ Follow-up care Follow-up care begins when active treatment ends. This is the time for primary care providers to ask oncology specialists for treatment summaries and CSC plans if they have not been received. Primary care providers must know the details of treatment in order to understand long-term health risks.33 Unfortunately, current factors hinder oncology specialists from creating survivorship plans: lack of reimbursement for their creation, recommendations for their use are fairly recent, and lack of an integrated electronic health record makes sharing the information between providers less efficient.34 Nevertheless, leaders in cancer research advocate for cancer treatment summaries to be provided to patients and their primary care providers to enhance quality cancer care across the survivorship continuum. Recently, the Quality Oncology Practice Initiative was introduced to document whether oncology practices are providing patients with care summaries.35 Nononcology providers rely on the expertise of oncology specialists to partner with them in order to assume and share survivorship care of their patients. Survivorship care summaries will give primary care providers expert guidance in managing the care of cancer survivors. This information should be requested from the oncology team so that surveillance and monitoring for late effects can occur (see Elements of a cancer treatment summary and a CSC plan). It is important to understand that the preparation of the CSC plan is the oncology team’s responsibility. ■ Consult CSC is nascent and is rapidly changing along with other changes in our health care systems. Both the National 6 The Nurse Practitioner

Comprehensive Cancer Network (www.nccn.org) and the American Society of Clinical Oncology (www.asco. org) offer and regularly update clinical guidelines. Additionally, there are other resources, including a free e-learning series for primary care providers at the National Cancer Survivorship Resource Center, co-sponsored by the American Cancer Society and the George Washington University Cancer Institute, and funded by the Centers for Disease Prevention and Control (cancersurvivorship centereducation.org). Burgeoning research related to the interaction of comorbidities of aging and late effects of cancer treatments given that almost 60% of survivors are over 65 years. This percentage will increase as baby boomers age. Therefore, there is a need for researchers to examine the interactions of comorbidities, aging, and exposure to cancer treatments. Primary care providers will need to familiarize themselves with these interactions as they are published. ■ Surveillance Surveillance for cancer recurrence or new primary cancers requires gathering information regarding recommended schedules and appropriate tests for the type of cancer for which a patient received treatment. Breast and colorectal cancers have established, evidence-based surveillance schedules from the ASCO, while most other cancers have consensus-based guidelines for monitoring from NCCN. Primary care providers should not only consult recommended guidelines but should also confer with the oncology specialist to clarify dates of last screening tests as well as screening and surveillance intervals. It should also be clarified which provider will perform the services. Cancer survivors must also be screened for new cancers, as they are at a higher risk for developing new cancers than the general population. Patricia Ganz2 recommends collecting a three-generation family history to determine the risk of cancer in other family members and for the survivor’s own risk for subsequent cancers that may be associated with a hereditary risk. In addition, some adjuvant cancer treatments carry an added risk for the development of cancer, such as body regions exposed to radiation therapy.2 NCCN Guidelines for Detection, Prevention, and Risk Reduction is a helpful guide for screening schedules, tests, and considerations of cancer screening. When caring for older adult survivors who have comorbidities, frailty, and limited life expectancy, NCCN’s Guidelines for Supportive Care: Senior Adult Oncology can assist primary care providers with decision making and discussing screening for new cancers with patients.



■ Monitor for late effects Monitoring and managing late effects and long-term effects of cancer treatment are essential to quality survivorship care because many cancer treatments carry the potential to cause adverse, long-term, and late effects. Late effects of treatment are defined as toxicities that are absent or subclinical at the end of treatment but manifest later. In contrast, Elements of a cancer treatment summary and a CSC plan Cancer treatment summary • Tumor characteristics: site, stage, grade, biomarker information • Dates of initial and last treatments • Type of surgery, names of chemotherapeutic agents, site of radiotherapy, names of hormonal therapy, biotherapy, other therapies, number and title of clinical trials • Adverse reactions or complications of therapies and future impact • Names and full contact information of providers and facilities where treatments were administered • Psychosocial, nutritional, and other supportive services received • Name of key contact or coordinator of continuing care CSC plan • Likely course of recovery from treatment toxicities and ongoing need for health maintenance of adjuvant treatment • Schedule and description of recommended cancer screening and follow-up tests and exams, who should perform them • List of possible late and long-term effects of cancer treatments • Signs and symptoms of recurrence and second tumors • Information regarding potential emotional needs related to changes in relationships, sexual dysfunction, work, and parenting • Information regarding social issues concerns with employment, legal and financial aid, and health insurance • Targeted recommendations for health promotion related to cancer and effects of treatments • When appropriate, information regarding genetic counseling and testing to identify high-risk individuals who can benefit from more comprehensive surveillance, chemoprevention, or risk-reducing surgery • Referrals for follow-up providers, support groups, other health professionals such as social workers, physical therapists, or mental health counselors • List of Internet-based and telephone resources for major cancer support organizations Source: Adapted from Hewitt M, Greenfield S, Stovall E. (2005). Executive Summary. In From Cancer Patient to Cancer Survivor: Lost in Transition (p. 3-5). http://books.nap.edu/openbook.php?record_id=11468&page=3.


long-term effects are adverse effects that appear during treatment and persist beyond the end of treatment.36 As cancer survivors live longer, more of these effects are described and documented. Effects include neuro-cognitive problems, premature menopause, cardiorespiratory dysfunction, sexual impairment, infertility, chronic fatigue, persistent bone marrow suppression, pain syndromes, and osteopenia/ osteoporosis. A targeted, cancer-related review of systems approach should be used in monitoring for late effects; subsequently, a problem list and assessment plan should be generated for positive findings.2 (See Cancer-related review of systems for detecting late and long-term effects of cancer treatments.) The Dana-Farber Cancer Institute/NCCN Cancer Survivorship Information (www.nccn.com/lifeafter-cancer/130-dfci-nccn-survivorship-overview.html) is created for patient but is useful to nononcology health professionals. A list of late effects, potentially experienced by cancer survivors, is helpful for recognizing and managing symptoms. ■ Health promotion Health promotion interventions are important in preventing and managing late effects. As discussed, cancer survivors are not only at increased risk for recurrent cancer and new cancers, but also for chronic diseases, such as cardiovascular disease, osteoporosis, diabetes, hypothyroidism, and functional decline. Routine screening for chronic diseases should be implemented as recommended by organizations, such as United States Preventive Services Task Force, American Thyroid Association, American Diabetes Association, American Medical Association, National Osteoporosis Foundation, and others. Equally important, interventions that improve or maintain health should be targeted. The American Cancer Society just updated their recommendations for nutrition and physical activity for cancer survivors.37 Advanced practice registered nurses (APRNs) should incorporate their recommendations and interventions, such as smoking cessation, decreased alcohol consumption, weight management, safe sun exposure, and measures to increase physical activity.38 The period after active treatment is often considered a “teachable moment” and is an opportune time to promote healthy lifestyle behaviors. ■ Psychosocial function Some survivors experience an increased burden of illness, especially those who have comorbid conditions. Negative psychosocial outcomes such as fear of recurrence, poor selfesteem, anxiety, depression, employment and insurance



Cancer-related review of systems for detecting late and long-term effects of cancer treatments2,4,42 Systems

Late and long-term effects

Treatment-related causes

Constitutional problems

• Metabolic problem/changes, thyroid cancer as second cancer • Cancer recurrence, infection, vasomotor disturbance • Lymphedema • Activity intolerance, depression

• • • •

All tissues

• Second cancers

• Radiation exposure, alkylating agents, corticosteroids • Nitrosoureas, anthracyclines, topoisomerase inhibitors

Skin

• Basal cell carcinoma • Endocrine changes

• Radiation exposure • Chemotherapeutic agents

ENT

• Cataracts • Hearing loss • Osteonecrosis of jaw

• Corticosteroids • Cisplatin • Bisphosphonates

Pulmonary

• Decreased lung volume • Interstitial pneumonitis, bronchiolitis obliterans • Pulmonary embolus

• Surgical lung resection • Bleomycin, methotrexate, adriamycin • Tamoxifen

Cardiovascular

• Heart failure • Cardiomyopathy, pericardial damage • Stroke or transient ischemic attack, peripheral vascular disease • Raynaud phenomenon

• Anthracyclines, taxanes, trastuzumab, bleomycin • Trastuzumab, cisplatin, cyclophosphamide • Cardiothoracic and large vessel radiation exposure • Tamoxifen

Breasts

• Breast cancer as second cancer

• Chest mantle radiation for Hodgkin disease

Renal

• Renal artery stenosis, renal insufficiency, hypertension

• Abdominal radiation or surgery • Cisplatin, methotrexate, nitrosoureas

Gastrointestinal

• Malnutrition, abdominal strictures and adhesions • Cirrhosis, hepatitis

• Pelvic radiation, abdominal surgery, vinca drugs • methotrexate, carmustine

Genitourinary

• Scar tissue, cystitis • Interruption of sympathetic nerve

• Surgery or radiation to prostate • Cyclophosphamide, ifosfamide • Retroperitoneal surgery

Gynecologic

• Premature menopause, vasomotor changes, endocrine changes, uterine cancer

• Surgery, radiation • Tamoxifen, aromatase inhibitors

Endocrine/reproductive history

• Hypothyroidism • Metabolic syndrome • Sterility

• Radiation to neck • Having had cancer, corticosteroids • Pelvic radiation or surgery, alkylating agents

Hematologic

• Persistent neutropenia, anemia, thrombocytopenia

• Radiation, alkylating agents, nitrosoureas • Bone marrow transplant

Infections

• Candidiasis, Kaposi sarcoma, tuberculosis

• Immunosuppressive therapies, splenectomy • Corticosteroids, purine analogs, rituximab

Musculoskeletal

• Osteoporosis, chronic pain • Osteonecrosis of hip

• Taxanes, aromatase inhibitors, endocrine therapies • Corticosteroids

Neurologic

• Peripheral neuropathy • Neuropathic pain • Decreased mental acuity

• Surgery, radiation, methotrexate, cisplatin • Multiagent chemotherapy, taxanes, vinca drugs • Brain radiation

Psychiatric/psychosocial

• Depression

• Cancer-related changes in health, finances, relationships • Fear of recurrence or new cancers

• Posttraumatic stress disorder


Radiation exposure to thyroid Alkylating agents, nitrosoureas, anthracyclines Surgical alteration of lymphatic drainage Cardiopulmonary late effects



discrimination, and relationship difficulties may affect functional status and quality of life.39 Therefore, providers must assess overall well-being in cancer survivors. Problems may appear months to years after treatment ends; therefore, a

Cancer survivorship resources for providers and patients Cancer Survivorship E-Learning Series for Primary Care Providers. Consists of free online modules addressing the current state of survivorship care and the role of primary care providers; Late effects of cancer and its treatments; managing comorbidities and coordinating with specialty providers; late effects of cancer and its treatment; and meeting the psychosocial healthcare needs of survivors. New modules will address health promotion, survivorship care planning, and clinical guidelines (www.cancersurvivorshipcentereducation.org). Livestrong Survivorship Centers of Excellence, Livestrong Foundation. Provides a listing of NCI-designated, comprehensive cancer centers with adult survivorship programs (www.livestrong.org/What-We-Do/Our-Actions/ Programs-Partnerships/LIVESTRONG-Survivorship-Centersof-Excellence). Facing Forward, NCI. Offers survivors practical advice to navigate through survivorship once active treatment has ended. Topics include practical ways of dealing with common problems and guidelines for managing physical, social, and emotional health (www.cancer.gov/ cancertopics/coping/life-after-treatment). Cancer.net, ASCO. Guides cancer survivors through survivorship and follow-up care. Discusses late effects, rehabilitation. Shares personal stories, artwork, and resources (www.cancer.net/patient/Survivorship). National Center for Complementary and Alternative Medicine. Offers evidence-based research regarding claims about alternative therapies for both cancer treatment and symptom management (nccam.nih.gov/ health/cancer/camcancer.htm). Cancer Survival Toolbox, National Coalition for Cancer Survivorship. An audio program that teaches skills to meet needs of illness (www.canceradvocacy.org/resources). Journey Forward, collaborative effort of National Coalition for Cancer Survivorship, UCLA Cancer Survivorship Center, Oncology Nursing Society, WellPoint Inc., Genentech. Offers downloadable forms for providers and patients for the purpose of creating survivorship care plans and a library with articles and fact sheets on follow-up care/symptom management (journeyforward.org/patients/patients). Cancer Survivorship in primary care. Offers a one-stop repository where primary care providers can quickly access resources for medical information and clinical guidance (www.cancersurvivorshipprimarycare.org).


periodic assessment is necessary. NCCN developed a tool called the Distress Thermometer tool, which can be found in the guidelines under Distress Management Guidelines. This tool is recommended when there is a transition in treatment, such as the return of a cancer survivor to the primary care provider after active treatment is complete or when a new patient gives a history of cancer. The tool is designed to be used in 5 minutes and clues providers to areas of distress that may be cancer-related. If the cancer survivor scores four or greater, a referral for assistance is usually warranted. ■ Patient resources Direct the cancer survivor to survivorship resources (see Cancer survivorship resources for providers and patients). Survival is life-long, and quality resources are widely available for patients. Professional organizations like ASCO and NCCN have extensive website information designed for patients. Printed materials can be ordered as well. Advocacy groups provide an array of online, printed, and phone line resources for cancer survivors. A unique resource, Vital Information and Tailored Assessment of the UCLALivestrong Survivorship Center of Excellence, offers patients a one-time consultation with a multidisciplinary team of NPs, clinicians, social workers, and other specialists. Patients receive a personalized evaluation and strategies designed to address late and long-term sequelae. Coordination with primary care providers is offered to maximize overall health. ■ Refer When planning for the needs of cancer survivors, refer patients to other professionals. Assimilating and applying the principles of CSC in primary practice mandates that providers recognize their limits of knowledge and experience in cancer care and not underestimate the complexity of CSC. Cancer survivors may require the services of a nutritionist, mental health counselor, social worker, physical or occupational therapist, and others. Some survivors benefit from integrative therapies like Yoga, massage, acupuncture, Reiki, Qigong, and nutritional supplements.40 When additional knowledge and expertise is needed to plan for care, providers should consult with and refer patients to oncology specialists who can help navigate care. ■ Cancer survivors Cancer survivors are at risk for a wide range of late and long-term effects of cancer treatments. Unfortunately, little is known about the incidence and prevalence of physical late effects in survivors of adult cancers, as few studies have been conducted in them; more studies have been conducted in adult survivors of childhood cancer. Therefore, providers



must be aware of all potential risks when cancer survivors return to primary care. APRNs in primary care should focus on taking cancer survivor-directed medical histories, treatment-related review of systems, and use a shared-care model where collaboration occurs with oncology specialists. Health promotion and aggressive management of comorbid conditions remain a standard of care for cancer survivors as with all primary care patients. Professional role clarity remains one of the most persistent challenges in CSC and consequently continues to evolve. Research is persuasive in making a solid case for shared-care models producing the highest quality outcomes in cancer survivorship. However, there remains uncertainty regarding who can and should do what and when. Unfortunately, it may be the cancer survivor who experiences the most frustration from professional role confusion. Other enhancements in CSC include research that targets the interaction of APRNs in primary care and cancer survivors. In addition, consistent practice and credentialing laws among states for APRNs are needed in order to expand the primary care workforce.41 Lastly, schools of nursing must incorporate CSC into curricula along with the management of other chronic diseases. These enhancements, along with additional evidence-based guidelines and further professional role clarity for survivorship care, will continue to improve the quality of services that primary care advanced practice nurses contribute.

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Layne Weaver is a Nurse Practitioner at Rheumatology Sports Medicine and Orthopaedics Center, Greensboro, NC. Ann Jessup is Clinical Assistant Professor Coordinator, Family Nurse Practitioner Program at UNC Chapel Hill, Chapel Hill, NC. Deborah K. Mayer is an Associate Professor at University of North Carolina Chapel Hill School of Nursing, Chapel Hill, NC. The authors have disclosed that they have no financial relationships related to this article. DOI-10.1097/01.NPR.0000435784.40143.62


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