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onFinancial and editorial supportwas provided by Millennium: The Takeda Oncology Company.

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Cancer andsurvivorship

Cancer survivorship refers to the entire processof living with, through, and beyond cancer. Aperson is considered a cancer survivor from the

time of diagnosis until death. (An acute cancer survivoris a person who is disease-free after completing cancertreatment.) Unfortunately, many patients enter survivor-ship with insufficient direction as to what to do. For in-stance, a survey of 1,130 oncologists published in theJournal of Clinical Oncology found that although abouttwo-thirds said they always or almost always discusssurvivorship, only a third discussed whom patientsshould see for follow-up care, and fewer than 5% pro-vided patients with a written plan for their survivorshipcare. The survey also found that of 1,020 primary careproviders, only 12% regularly discussed survivorshipcare recommendations.

Nurses’ strength in educating patients can be lever-

aged to improve survivorship care. For example, on -cology nurse navigators play an integral role on multi-disciplinary, hospital-based teams of oncology pro-fessionals. Together, team members care for the needsof the whole patient, providing interventions that addressnot just the disease but the patient’s mind and body.

This article enhances nurses’ awareness of the

challenges cancer survivors face, including fear ofcancer recurrence and late physiologic effects (suchas fatigue and cognitive effects) of treatment. It alsoexplains the role of the survivorship nurse navigatorin an academic, hospital-based survivorship program.(See Survivorship nurse navigator: Overview and dai-ly responsibilities.)

Survivorship challenges In 2014, an estimated 1.6 million new cancer caseswill be diagnosed in the United States and more thana half-million people will die of cancer. About 14 mil-lion Americans are cancer survivors.

Extended survivorship from cancer used to be a rareoccurrence. But with new medical advances, early de-tection, and more targeted treatments, the odds of sur-viving have markedly improved in many cancers. A

prime example of a cancer with achanged natural history due to tar-geted therapies is multiple myelo-ma. Many targeted therapies arelong term, and adherence plays apivotal role in achieving long-termoverall survival. The importance ofkeeping follow-up appointmentsand taking treatments correctly forthe prescribed duration can’t bestressed enough. Educating pa-tients to keep appointments, aswell as monitoring adherence forsuch agents as immunomodulatorydrugs and proteasome inhibitors iscrucial throughout acute treatmentand long-term surveillance.

As more cancer patients survivetheir diagnosis, the lingering effectsof cancer therapy can give rise tonew challenges, such as post-treat-ment effects (for instance, fatigueand cognitive changes). Other is-sues include the psychological (for

example, fear of recurrence) and financial (for example,continued insurance coverage) effects of living withcancer in terms of a “chronic” disease. Formal survivor-ship care can help patients manage these problems.

The American College of Surgeons (ACoS) recom-mends that programs accredited by the Commission onCancer (CoC) implement a process to provide sur-

Cancer survivorshipUnderstanding cancer survivorship care

By Patricia Leighton, MSN Ed, OCN

30 American Nurse Today Volume 9, Number 9 www.AmericanNurseToday.com

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vivorship care to all patients who’ve completed cancertherapy by 2015; this care should include appropriatefollow-up and surveillance. The 2005 Institute of Medi-cine report “From Cancer Patient to Cancer Survivor:Lost in Transition” recommends a survivorship careplan and appropriate follow-up methods for all cancerpatients, to bridge the gap from active treatment tosurvivorship. Bridging that gap includes addressing thechallenges of both the disease and its treatment.

Some problems cancer survivors may faceThe uncertainty of a cure and fear of cancer recur-rence or progression are common among survivorsand can cause pronounced anxiety. Many patientslive from day to day not knowing what their “newnormal” is. This makes it hard for them to interpretthe physical ailments they may be experiencing.Some may fear a simple head ache or joint painmeans their cancer has returned or progressed. Theanniversary of the cancer diagnosis may be especiallydistressing, causing the patient to avoid scheduledfollow-up exams. Approximately 29% of cancer sur-vivors experience depression, anxiety, and vulnerabil-ity for fear of recurrence. Nearly 20% may meet thecriteria for posttraumatic stress disorder. Fear of re-currence can have a significant domino effect: pa-tients may become so anxious that they isolate them-selves socially, which can lead to work-related,financial, and other difficulties.

Cognitive effectsLong-term cognitive effects of can-cer therapy can last months or evenyears after treatment ends. Such im-pairment, sometimes called chemobrain, can be life-altering. Radiationand hormonal therapy also maycause cognitive and memorychanges. Approximately 20% to 30%of cancer patients report some de-gree of thought impairment, de-scribed by many as difficulty form-ing words, memory loss, and poorconcentration. The degree of cogni-tive impairment varies. Some sur-vivors report sporadic impairments;others say the effects are long-last-ing, decrease their quality of life, orcause permanent disability.

FatigueFatigue can be a debilitating effectof both cancer and its treatment.The National Comprehensive CancerNetwork (NCCN) describes cancer-related fatigue as “a distressing, per-sistent, subjective sense of physical,emotional, and/or cognitive tired-ness or exhaustion related to cancer

or cancer treatment that is not proportional to recentactivity and interferes with usual functioning.” Fatiguecan disrupt the patient’s normal routine and affect qual-ity of life. Activities of daily living may become a chal-lenge. Extreme exhaustion may cause patients to avoidactivities they previously performed independently.

Survivorship care model As patients approach completion of their cancer treat-ment, they may wonder, “What steps should I take toreturn to my normal life?” Transitioning from acute sur-vivorship (active treatment) to extended survivorship(after completion of treatment) can provoke various re-actions, depending on a survivor’s specific experience.Survivorship care helps smooth the transition from aprimary oncologist’s care to a survivorship care model.Ideally, a survivorship care plan should to be estab-lished at diagnosis and updated as a patient progressesthrough the cancer journey.

Survivorship visitAt Greenville Health System Cancer Institute, the treat-ing oncologist refers patients to a survivorship careteam after the initial cancer treatment ends. The teamuses a patient-centered, multidisciplinary approach. Sur-vivor visits are conducted in a private nonclinical envi-ronment. Before meeting the entire survivorship team,patients fill out a 12-item questionnaire, called a dis-tress inventory.

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Survivorship nurse navigator: Overview and daily responsibilities At Greenville Health System Cancer Institute in Greenville, South Carolina, the sur-vivorship nurse navigator communicates, collaborates, and coordinates with othermembers of the multidisciplinary survivorship team to ensure efficient, effectivepatient care. The nurse navigator orchestrates and coordinates direct and indirectcare and promotes communication both among the survivorship team and withthe cancer survivor.

Daily responsibilities include initial intake and communication of all survivor-ship referrals. The navigator notifies the survivor on receipt of the oncologist’s re-ferral for survivorship care, educates the patient about the purpose of the survivor-ship care-planning visit, tells the patient which clinicians will participate in the visit,and previews the information, resources, and education the patient will receive.

Before each survivorship visit, the navigator extracts and prints data from thepatient’s electronic medical record and prepares the survivorship care-plan docu-ment. He or she carefully scrutinizes the record to identify previously documentedsurvivorship challenges. The navigator provides a summary of these challenges ona team communication report and disseminates the report to the multidiscipli-nary team before the patient’s visit.

Shortly before the patient’s first clinic visit, the survivorship multidisciplinaryteam “huddles” to discuss how team members can meet the patient’s needs andchallenges effectively. Then the nurse navigator greets and assesses the patient;obtains vital signs, a fatigue score, and body mass index; and reconciles the pa-tient’s medication list. During the multidisciplinary visit, the navigator documentsadditional needs identified by the team and provides the resources or referrals re-quired to meet the patient’s needs.

32 American Nurse Today Volume 9, Number 9 www.AmericanNurseToday.com

Then the patient and team members—a medical on-cologist, nurse navigator, oncology registered dietitian,and oncology licensed social worker—have a roundtablediscussion. Members of each discipline intervene basedon collective and collaborative assessment of the pa-tient’s needs. The patient’s nutritional status and needs(for instance, weight gain or loss and daily eating habits)are discussed and the dietitian provides nutritional coun-seling. In some cases, an exercise routine is recommend-ed to help the patient lose or gain weight as needed,improve energy levels, and increase stamina and self-esteem. The survivorship physician may order oncologyrehabilitation and teach the patient about the benefits ofcombining dietary interventions with exercise. At the pa-tient’s request, evidence-based complimentary integrativetherapies (such as acupuncture) are included.

The distress management tool the patient completedearlier is reviewed by the survivorship physician, socialworker, and nurse navigator. Theyscreen for categorical items identify-ing distress, such as practical issues(insurance or housing), physical is-sues (fatigue and appearance), familyissues (child or partner relationships),emotional issues (fear and worry),and spiritual (faith) issues. The socialworker and physician address theitems that indicate a significant level of distress. (Whilesome distress is expected, about one-third of cancerpatients experience a significant amount. Distress does-n’t necessarily result from the cancer diagnosis or expe-rience, but it plays a significant role in the patient’scoping and compliance.)

The team discusses the survivorship plan with thepatient and gives the patient a copy, along with thepathology report. The plan details the patient’s entirecancer experience. A three- to four-page document, it’sprepared before the patient’s visit by extracting datafrom the medical record—including demographic in-formation, healthcare team members’ names, diagnosisdate, cancer type and stage, chemotherapeutic agentsreceived and their cumulative dosages, family cancerhistory with possible genetic risks, comorbidities, treat-ment toxicities and adverse effects, recommended sur-veillance schedule, and referrals based on the patient’sneeds. For instance, some patients may need densito-metry testing, nutritional education and counseling,oncology rehabilitation, and psychosocial support andcounseling. The plan include guidelines for recom-mended follow-up care throughout survivorship.

Significance of survivorship educationSurviving cancer provides a unique incentive for thepatient to make positive lifestyle changes and adopt ahealthier lifestyle. Behavioral changes, such as adher-ing to a new diet, starting an exercise routine, or prac-ticing mindfulness to control anxiety, can prove diffi-cult. However, the cancer diagnosis and the feeling of

vulnerability it brings can provide a teachable momentthat catalyzes the patient to make behavior changes.The survivorship visit is an opportune time for theteam to provide patient education about long-termtreatment effects and the benefits of good nutritionand exercise.

One goal of the survivorship visit is to encouragepatients to share the care plan with their primaryhealthcare team to help them understand the patient’sneeds and participate in care. The care plan empowerspatients to take control through knowledge and specif-ic resources that help them grow comfortable withtheir “new normal”.

On the path to prolonged survival Cancer survivors desire a return to normal. To achievetheir new normal, they need healthcare education andsurveillance measures specific to their health and well-

ness needs. With cancer survival ratesincreasing, the need for managementof long-term side effects, education,surveillance for disease progressionand secondary cancers, and promo-tion of physical, psychological, andpsychosocial well-being become pri-orities. Survivorship care provides theeducation and support needed for pa-

tients to adopt and adapt to positive lifestyle changes.Nurse navigators have the opportunity to teach andgive direction to cancer survivors, guiding them on thepath of prolonged survival. O

Patricia Leighton is an oncology survivorship nurse navigator at Greenville HealthSystem in Greenville, South Carolina.

Selected referencesAmerican College of Surgeons. Cancer Program Standards 2012: En-suring Patient-Centered Care. http://facs.org/cancer/coc/program-standards2012.pdf. Accessed March 7, 2014.

Blanch-Hartigan D, Forsythe LP, Alfano CM, et al. Provision anddiscussion of survivorship care plans among cancer survivors: Re-sults of a nationally representative survey of oncologists and pri-mary care physicians. J Clin Oncol. April 21, 2014.

Centers for Disease Control and Prevention. How many people arecancer survivors; 2012. http://www.cdc.gov/cancer/survivorship/basic_info/index.htm. Accessed March 12, 2014.

Miguel J F, Schlag R, Khuageva N, et al. Persistent overall survivalbenefit and no increased risk of second malignancies with borte-zomib-melphalan-prednisone versus melphalan-prednisone in pa-tients with previously untreated multiple myeloma. J Clin Oncol.2013;31(4):448-55.

Miller KD. Medical and Psychosocial Care of the Cancer Survivor.Sudbury, Mass:Jones and Bartlett; 2009.

National Cancer Institute. SEER Stat Fact Sheets: All Cancer Sites;2012. http://seer.cancer.gov/statfacts/html/all.html. Accessed March7. 2014.

Survivorship. American Society of Clinical Oncology; 2012. www.cancer.net/survivorship. Accessed March 7, 2014.

Taking charge of follow-up care. National Comprehensive CancerNetwork. www.nccn.org/patients/resources/life_after_cancer/sur-vivorship.aspx. Accessed March 10, 2014.

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Patients who are cancer survivors may requireeducation on a wide variety of topics, fromnutrition to long-term follow-up needs. It’s

vital that nurses ensure patients understand the in -formation they are given. One useful technique isteach-back.

What is teach-back?Here’s how teach-back works: Ask the patient to ex-plain the information you’ve just presented, so youcan confirm if he or she comprehends it.

For instance, you know that it’s important for pa-tients to complete their full course of therapy. Onereason they may not complete therapy is difficultywith side effects. You may have to work with patientsto ensure they can manage these effects.

If you’ve just taught a patient strategies she can useto manage fatigue, ask an open-ended question ormake a statement that implicitly asks for a response;for instance: “Tell me which ideas you plan to try.”Based on the patient’s response, you can determinewhether she understands the information or needs fur-ther teaching.

Break up information into smaller chunks to makeit easier for patients to learn the material. One contin-uous hour of teaching is a large block of time forsomeone to absorb and retain information. Also beaware that “chemo brain,” which refers to such cogni-tive changes as poor memory after cancer treatment,can affect ability to learn.

For the most effective education, hold teach-backsessions as soon as the patient’s learning needs areidentified. For instance, if a patient needs to completeone year of therapy on a treatment, it’s important todiscuss the treatment plan and goals up front to en-sure the patient understands. To maximize effective-ness, also follow the guidelines below.

Encourage family presenceBe aware that family presence is crucial for interac-tive learning and asking good questions. The morepeople who ask questions and remember what they’velearned, the better off the patient is. Giving familymembers the information they need to help a lovedone is essential to effective care. Of course, it’s the pa-

tient’s choice as to which family members or friends toinclude.

Make it hands-onHands-on teaching is a key aspect of the teach-backmethod. Say, for instance, you’re focusing on using a pill-box to prepare a week’s supply of your patient’s medica-tions. Have the patient fill the box, rather than simply tellhim about it. Another example: when explaining thetreatment schedule for a patient who is taking or receiv-ing cancer therapy, you could provide a calendar ofscheduled treatments the patient can mark off as theyare completed.

Assess baseline knowledgeYou can use the teach-back method to evaluate thepatient’s baseline knowledge of a topic and determinewhat other providers have already taught. Patients maytune out if they already have a good understanding ofthe topic at hand. Start by asking what the patient al-ready knows to help determine if you need to reviewthe basics. If the patient already understands the ba-sics, move on to more complex information.

Schedule sessions in advanceSchedule teach-back sessions at a time that’s conven-ient for the patient, rather than on the spur of the mo-ment. This helps ensure the patient will be alert andmentally prepared when you arrive. Also, it means afamily member is more likely to be present. Finally,tell patients at the beginning of the session that you’llbe asking questions. If they know they’ll be quizzed,they may be more attentive.

Improving quality of lifeUsing teach-back helps ensure cancer survivors under-stand what they are learning so they can apply the in-formation to improve their quality of life.

To learn more about the teach-back method, down-load this file at the NC Program on Health Literacywebsite: www.nchealthliteracy.org/toolkit/tool5.pdf. O

The authors work at the Washington Regional Medical Center in Fayetteville,Arkansas. Melanie Haney is the assistant director of cardiology/progressive care.Jessica Shepherd is a cardiology/progressive care staff nurse and clinical coordinator.

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Teach-back essentials forcancer survivors

Use this method to help patients grasp the information they need. By Melanie Haney, MSN, RN, PCCN, and Jessica Shepherd, BSN, RN