Category I: Patient Education

October 2013 Vol 4, No 5

Developing Culturally Relevant Breast Cancer Resources—Getting Connected: African-Americans Living Beyond Breast Cancer
Catherine Creme Henry, MA1; Arin Ahlum Hanson, MPH, CHES1; Patricia K. Bradley, PhD, RN2; Janine Guglielmino, MA1
1Living Beyond Breast Cancer; 2Villanova University College of Nursing

Background: Living Beyond Breast Cancer (LBBC) conducted focus groups of African-American women (AAW) affected by breast cancer and learned that they prefer culturally specific resources for education and support. The publication, Getting Connected: African-Americans Living Beyond Breast Cancer, was written to fill gaps in resources for AAW. In 2011, the second edition was published to reflect changes in breast cancer care, cancer disparities, and perceptions of breast cancer. Oncology nurses served as advisors to ensure quality-of-life aspects of care were included.

Objectives: (1) To increase attendees’ level of knowledge and understanding about the consumer-based, participatory approach used to create a culturally specific resource. (2) To present methods to use the resource as an effective communication tool with African-American breast cancer survivors and families. (3) To enable attendees to share best practices for using tailored, culturally specific resources with women and families.

Methods: (1) A qualitative, community-based participatory approach was used during the revision process for Getting Connected. It involved 3 components: (1) a national advisory committee of community leaders and healthcare providers (HCPs); (2) 5 focus groups with AAW (n=44) diagnosed within 2 years of the project; and (3) interviews of 8 informants who work with AAW. LBBC worked with community-based groups to hold focus groups in Philadelphia, Pennsylvania; Little Rock, Arkansas; and Chicago, Illinois. The groups were recorded, transcribed, and analyzed for salient themes. Getting Connected was revised and redesigned using “plain language” principles. This edition of Getting Connected is a 50-page culturally relevant resource designed for and to be used by African-American breast cancer survivors, their caregivers and supporters, and their HCPs. Published in October 2011, this resource promotes informed decision-making, while providing support and inspiration.

Results: More than 10,000 copies of the second edition have been distributed to HCPs and AAW affected by breast cancer. Evaluation feedback indicates that 92% of readers felt more prepared to connect and communicate with their HCPs; 85% of readers strongly related to the personal stories shared; all readers agreed that they would keep this resource for future reference; and 86% said they would seek other LBBC services. This feedback shows that the resource is useful for nurse navigators to use when working with AAW diagnosed with early-stage or metastatic breast cancer.

Conclusions: Getting Connected addresses how to build trusting patient–provider relationships and live fully beyond breast cancer. AAW can use this resource to talk to loved ones about their support needs. Oncology nurse navigators can effectively meet the educational needs of AAW by relying on this up-to-date culturally relevant resource to help initiate quality-of-life discussions with AAW affected by breast cancer and present themes as icebreaker topics at support group meetings.

The Benefits of Early Nurse Navigation and Patient Education in the Care of Advanced Cancer Patients at Intermountain Healthcare Southwest Region
Cheryl Bellomo, RN, OCN, CBPN-IC1; Deborah Christensen, RN, BSN, HNB-BC2
1View Medical Center; 2Dixie Regional Medical Center

Background: Patients and their families facing the diagnosis of cancer, especially advanced cancer, can feel lost, uncertain, overwhelmed, and fearful of the healthcare system. At Intermountain Healthcare Southwest Region, our goal is to provide patients and their families with a hand to hold throughout their cancer journey. The role of the nurse navigator is pivotal in providing patients with information to allow them to make the best informed decisions regarding their care, to remove barriers, and to assist patients in receiving treatment services in an equitable and timely manner to improve outcomes.

Objectives: (1) Alleviate uncertainty and improve patient knowledge regarding oncology care. (2) Develop and implement a process to streamline scheduled appointments/consultations, tests, and procedures. (3) Involve the nurse navigator in patient care from the time of initial diagnosis/referral through the continuum of care. (4) Identify and address barriers to care. (5) Encourage patient treatment compliance through education and symptom management.

Methods: (1) Implemented a patient care plan to include workup and staging with scheduling of appointments, tests, and procedures. (2) Referred patients to local/state/national services and programs based on identified barriers to care. (3) Developed standardized teaching packets for new patient visits and chemotherapy/radiation and met with patients and families to optimize the learning experience. (4) Provided patients with information on multidisciplinary services offered at the cancer centers to treat and rehabilitate the whole patient. (5) Provided patients and their families with information on support programs offered at the cancer centers.

Results and Conclusions: At Intermountain Healthcare Southwest Region, we observed the benefits of early nurse navigation in the care of our advanced cancer patients. Involving the navigator at the time of diagnosis has assisted patients in removing financial barriers to care, coordinating care in the scheduling of appointments/tests/procedures, and improving initial consultation and communication with the oncologist. Educational material regarding treatment and management of side effects alleviates anxiety, improves patient compliance, and enables patients to complete the recommended treatment. Education and resources empower patients with the tools they need to make informed decisions as well as be an active participant in their care. Patient care plans, patient education, and patient empowerment lead to improved outcomes for our patients.

A Powerful Toolkit Meeting the Diverse but Unique Needs of Young Women Diagnosed with Breast Cancer
Stacy Lewis, BS, CHES
Young Survival Coalition

Background: Each year, approximately 13,110 women under the age of 40 years are diagnosed with breast cancer, and 1200 die of the disease. There are approximately 250,000 breast cancer survivors living in the United States today who were diagnosed under age 40. About 10% of patients are diagnosed with metastatic disease. Young women face more aggressive cancers, lower survival rates, and struggle with unique psychosocial concerns. Yet, within this young population, there is a diversity of needs and experiences among those who are newly diagnosed, posttreatment, long-term survivors and/or those living with metastatic disease.Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. Our Navigator resource series provides a powerful “toolkit” to meet the varying needs of all young women diagnosed.

Objective: To provide educational and organizational tools for young women diagnosed with breast cancer, at any stage of their journey, that provide pertinent knowledge and wisdom to empower these young women to be their own best health advocates.

Methods: YSC surveyed young women newly diagnosed with breast cancer (308), living with metastatic disease (300), posttreatment (268), and long-term (≥5 years postdiagnosis; 461) to determine their unique needs, concerns, and information requirements. We also utilized focus groups of these patient populations and workgroups composed of survey participants and psychosocial professionals to aid in drafting and refining our toolkit.

Results: YSC developed 4 tools to help a young woman cope with her disease, wherever she is along her journey. The Newly Diagnosed Resource Kit provides a young woman with the information and tools to confront her disease, with pertinent definitions, explanations, and communication tips, as well as a binder to organize medical records and appointments. Our Metastatic Resource Kit helps a young woman understand her diagnosis, discusses treatment options, and provides tips on practical matters and maintaining quality of life. The Post-Treatment Navigator provides support for the young woman’s adjustment to breast cancer survivorship. Finally, our Long-Term Survivor Guide discusses issues most relevant to this population including long-term side effects and fear of recurrence. Each of our navigators provides practical and encouraging ways for young women surviving and living with breast cancer to be their own best advocate.

Conclusions: Young women surviving breast cancer have varied needs. YSC has developed a “toolkit” of navigators and resources to meet those unique needs.

Identification and Management of Adverse Events Associated with Everolimus in Hormone Receptor–Positive Advanced Breast Cancer
Jan Hronek, MSN, ACNP, AOCNP
Tennessee Oncology/Sarah Cannon Research Institute

Background: Oncology nurse navigators work closely with patients to assist in the management of breast cancer (BC) and help improve patient outcomes, ultimately affecting quality of life. Comprehensive knowledge of adverse events (AEs) of current treatment options and of management strategies is important for proper patient care. Everolimus (EVE), a mammalian target of rapamycin (mTOR) inhibitor, was approved in combination with exemestane (EXE) to overcome endocrine resistance in patients with hormone receptor–positive (HR+) advanced BC.

Objectives: To evaluate safety data obtained at 18-month median follow-up during the BOLERO-2 trial and potential strategies to manage key AEs associated with EVE.

Methods: BOLERO-2, a double-blind, placebo-controlled, phase 3 study evaluated EVE (10 mg/day) or placebo in combination with EXE (25 mg/day) in postmenopausal women (N=724) with HR+/human epidermal growth factor receptor 2 (HER2)-negative advanced BC refractory to letrozole or anastrozole.

Results: Stomatitis (all grades) was the most common mTOR-related AE for EVE+EXE versus placebo (PBO)+EXE (59% vs 12%). Other common class-specific AEs (all grades) included infection (52% vs 25%), rash (39% vs 7%), noninfectious pneumonitis (16% vs 0%), and hyperglycemia with new-onset diabetes (16% vs 3%). Grade 3 class-effect AEs occurred in <10% of EVE+EXE–treated patients. Grade 4 infection (1.5%) and hyperglycemia (0.4%) were uncommon; no grade 4 stomatitis or noninfectious pneumonitis was observed. Of patients in the EVE+EXE and PBO+EXE groups, 38% and 3%, respectively, required ≥1 dose reduction because of AEs. Median duration of EVE dose interruption and reduction was 7 and 29 days, respectively. Treatment discontinuation as a result of AEs occurred in 26% and 5% of the EVE+EXE and PBO+EXE groups, respectively. Patient education is key in AE management. For stomatitis, a prophylactic treatment approach and proper oral hygiene allows for early recognition to minimize the effect. If stomatitis occurs, topical corticosteroids or mouthwashes containing anesthetics can be used. Noninfectious pneumonitis can be managed by use of combination radiographic imaging and oral corticosteroids and temporary cessation of treatment. Obtaining fasting serum glucose levels is recommended before initiating EVE and periodically after; optimal glycemic control should be achieved before EVE treatment. For severe AEs, dose modification may be necessary.

Conclusions: EVE-associated AEs were mild to moderate, and infrequent grade 3/4 events were adequately managed using established recommendations and patient education. A thorough understanding of EVE/EXE-associated AEs and management will allow oncology nurse navigators to assess, implement, and manage treatment plans, thereby improving patient care. Supported by Novartis Pharmaceuticals Corporation.

Early-Stage Lung Cancer and Palliative Care Intervention
Anna Cathy Williams, RN, MSN, PHN; Betty Ferrell, PhD, FAAN; Rebecca Fujinami, RN, BS, OCN; Dan Raz, MD; Jae Kim, MD; Rupinder Sidhu, CSW
City of Hope Medical Center

Background: In 2013, new lung cancer diagnoses and deaths were projected to be 229,000 and 159,500, respectively (American Cancer Society’s Facts and Figures 2013). These individuals and their families experience numerous symptom and quality-of-life (QOL) concerns. Patient education is essential to support in coping with multiple physical symptoms, psychological concerns such as depression, social concerns such as family burden, and spiritual issues associated with often advanced disease and poor prognosis.

Objective: With rapidly evolving diagnostics and treatment methodology, patients with early-stage lung cancer (ESLC) are increasing in numbers. Although stage I-II patients are deemed “curable,” there lingers severe psychological distress, threats of recurrence, new primaries, and existing or imposed comorbidities due to the treatment itself. Consequently, the outlook remains tenuous for this population. With improving survival rates, it is imperative that patients with ESLC be fully assessed, aggressively managed, and followed up. Through a comprehensive care plan and interdisciplinary effort, healthcare professionals may be able to offer patients with ESLC stellar evidence-based intervention and a greater chance of possessing a sense of normalcy in their lifestyles. The purpose of this National Cancer Institute Program Project Grant is to test the effects of a Palliative Care Intervention (PCI) on overall QOL and psychological distress, compare symptoms, patient assessment outcomes, and test the effects of the PCI on the healthcare system use compared with a usual care group. The long-term objective of this research is to provide evidence for change in the paradigm of care given to patients with ESLC and their caregivers across the cancer trajectory.

Methods: The framework for the project combines patient-centered teaching principles and concepts from National Comprehensive Cancer Network Guidelines for ESLC as well as Distress Management and National Consensus Project Guidelines for Palliative Care. The project design includes 2 phases. Phase I provides usual care for 12 months postaccrual. Phase II is the PCI phase, which consists of a comprehensive evaluation review by an interdisciplinary team, 4 intervention sessions, and 4 follow-up phone calls. The intervention provides implementing standardized protocols, including symptom management and QOL assessment.

Results: In Phase I, 103 patients were accrued. All stages were equivalent at baseline on demographic variables, and clinical and functional status. Physical function fluctuated, along with a decrease in the total number of symptoms longitudinally.

Conclusions: Pilot studies conducted in this lung cancer research program led to the development of a program project that aims to improve QOL and symptom management for patients with lung cancer and their caregivers. The PCI phase continues, and has shown great promise in efforts to provide palliative care early on.

Community Cancer Center Launches Oncology Rehab Program Demonstrating Improved Quality-of-Life Measures
Sue Potts, PT; Lea Powell, RN, MSN, OCN; Danelle Johnston, RN, MSN, OCN, CBCN; Gianna Laiola, RN, MSN, OCN; Shannon Lindop, RN, BSN, OCN; Mary Wickman, RN, PhD
St Jude Centers for Rehabilitation & Wellness

Background: Evidence shows that patients undergoing cancer treatments suffer from a multitude of long-term symptoms and side effects that affect their daily quality of life. Our organization identified a gap in the rehabilitation needs of our cancer survivors. The Institute of Medicine has recognized that cancer rehabilitation is a distinct phase of survivorship care. Oncology Rehab Partners developed an oncology rehabilitation program (Survivorship Training and Rehabilitation [STAR]) that assists in managing acute and long-term side effects of cancer treatments and cancer symptoms. Evidence has shown that oncology rehabilitation increases overall functioning for cancer survivors.

Objectives: To demonstrate the effectiveness of the oncology rehabilitation program in decreasing pain and fatigue and improving functional abilities with an overall outcome of increasing quality of life.

Methods: The Director of Oncology Services attended a survivorship conference and learned of the STAR program. Administration, rehabilitation team, interdisciplinary team, and physicians supported the adoption of the program. Oncology and rehabilitation staff (N=47) completed 10 self-directed modules of survivorship and rehabilitation training. The referral process was then implemented, and a Quickbase database was created to collect data on patients regarding physical and occupational outcomes. Measurement tools with established validity and reliability included the FACIT-Fatigue Scale, Borg Rating of Perceived Exertion Scale, and Eastern Cooperative Oncology Group Performance Status as well as patient self-reporting of pain, fatigue, and the standardized Six-Minute Walk Test. Data were entered into and analyzed using IBM SPSS 21 for Windows. Descriptive and correlational statistics were used to determine variable relationships.

Results: Ninety patients were referred to the STAR program. Of those, 84 initiated therapy (93%), 86% (n=72) completed the program, and 32% (n=23) completed the pre- and postmeasures for the program. Fourteen percent (n=12) did not finish the program because of the initiation of additional cancer treatment or because they self-discharged from the program. Mean scores showed improvements in fatigue (43.2%), perceived exertion (12.99%), activity tolerance (20.16%), and pain over time (21.6%). Pain improvement was correlated with decreased fatigue, r(15) = .68, P <.05. Patients who reported a decrease in pain showed improved FACIT-Fatigue scores, r(15) = –.68, P <.01, which also measures fatigue.

Conclusions: The 6-week oncology rehabilitation program demonstrated significant improvement for patients regarding long-term results in quality of life. Opportunities for improvement include separating patient data into those currently undergoing active cancer treatment versus those who have completed treatment, increasing the use of a physical medicine and rehabilitation physician to support the healthy lifestyle commitment, and capturing patient discharge data.

Best Practices for Cancer Survivor Education Programs
Elizabeth Hatcher, RN, BSN; Anne Willis, MA; Mandi Pratt-Chapman, MA; Shannon Colvin
GW Cancer Institute at the George Washington University

Background: The transition off active treatment has been described as a “teachable moment” to prepare cancer survivors for the posttreatment phase; however, little is known about how to best educate cancer survivors. Cancer survivor education programs aim to prepare patients for the transition from active treatment to the posttreatment phase by providing information, support, and resources to empower survivors to cope effectively with these concerns. Finding the ideal time, setting, and delivery method for cancer survivor education programs is a challenge; survivors have competing priorities after completing treatment and may not have the same preferences for learning and support that they did during treatment. Many healthcare professionals seek to implement cancer survivor education programs but need guidance on the best practices.

Objectives: The objective of the Best Practices for Cancer Survivor Education Programming Survey was to gather information on best practices for the strategies, structure, and content of education programs for survivors of any type of cancer.

Methods: A 23-item Web-based survey was sent to healthcare professionals using a convenience sample and snowball method. Professionals who have developed or facilitate cancer survivor education programs were eligible. Participants were also given the option to identify themselves for a follow-up semi-structured interview to probe further on their survivor education program structure, content, and delivery.

Results: More Findings from the survey and interviews will be presented, including a summary of best practices related to specific topics in the respondent’s education program, the number of sessions, format and method of delivery, time of day, day of week, location, and information regarding successes, challenges, and adaptations to the program.

Conclusions: Surveying cancer education providers regarding best practices for posttreatment survivor education will provide valuable information for other professionals designing and implementing these programs. This research serves as a catalyst for a dialogue regarding creating and sustaining effective programs to educate cancer survivors.

Improving Patient Readiness for Initial Chemotherapy Using a Nurse-Based Prehabilitation Teaching Protocol
Deanna Xistris, APRN, AOCN
Stamford Hospital/Bennett Cancer Center

Background: Patients presenting for initial chemotherapy to the outpatient Medical Oncology Unit consistently raised questions and concerns regarding the therapy that required clinician time prior to starting therapy. This resulted in delay of start/finish times of therapy and secondary backlog of treatment space availability. This also caused delay for subsequent patients assigned to receive therapy. Patient readiness for the therapy and the nurse’s ability to meet identified needs/concerns were also limited by the short time frame during which needs were identified. A distinct “teaching visit” by an APRN following the Physician Consult was added to the process with the stated goal of identifying social, financial, and physical needs and concerns prior to the start of therapy and in a time frame that would allow for referral for appropriate interventions prior to the start of therapy.

Objectives: To describe a best practices prehabilitation chemotherapy teaching protocol that is implemented at Stamford Hospital by nurses prior to the start of treatment.

Methods: Prehabilitation interventions designed to prepare patients physically and emotionally for upcoming treatments have received considerable attention lately.1 Nurses at Stamford Hospital’s Bennett Cancer Center have implemented a chemotherapy teaching protocol that is part of the electronic medical record (EMR). This protocol was developed based on identification of factors observed to interfere with individual readiness for the start of therapy and efficiency of bed/chair utilization and responsiveness to patient/family needs. The protocol includes a distinct nurse-based teaching visit—face to face with the patient—that is scheduled from 30 to 60 minutes. The protocol includes assessments, patient education, and screening for interventions. The protocol is also a screening tool that is used to recommend referrals—nutrition, counseling, physical therapy, lymphedema, integrated medicine, financial, home care, transportation, surgery (port placement). Referrals are automated into the EMR. The full assessment, requested referrals, and key individualized needs are available/visible to the “treating nurse” the day of initial therapy.

Results: Medical oncologists now consistently refer for the APRN-directed prechemotherapy teaching visit. The treatment nurses report that the patients are presenting for the start of chemotherapy in a much less distressed state, and treatments are routinely started in a timely manner. The nurses also acknowledge they can target their teaching to the immediate chemotherapy-related issues with increased patient/family understanding and compliance with directions. Referrals and subsequent follow-through have increased based on the preassessment process.

Conclusions: Nurses can and should be involved in prehabilitation interventions, ideally using protocols and tracking outcomes to improve cancer care. Early identification of an individual’s unique vulnerabilities prior to starting chemotherapy allows time and opportunity for referrals and interventions to mitigate identified limitations and thereby enhances treatment readiness, tolerance to therapy, and eased recovery posttherapy.


  1. Silver JK, Baima J. Cancer prehabilitation: an opportunity to decrease treatment-related morbidity, increase cancer treatment options and improve physical and psychological health outcomes. Am J Phys Med Rehabil. 2013;92(8):715-727.

Radium-223 Dichloride (Radium-223) Handling, Administration, Safety, and Counseling Information for Use in Patients with Castration-Resistant Prostate Cancer and Symptomatic Bone Metastases
Shelley Rio, ACNP-BC1; Mona M. Whaba2; Michael Tomblyn, MD3; E. David Crawford, MD4
1University of Colorado Anshutz Medical Campus; 2Bayer HealthCare Pharmaceuticals; 3Algeta US; 4University of Colorado

Background: Radium-223 (formerly known as Alpharadin) is a novel alpha-emitting radiopharmaceutical that selectively targets bone metastases with high-energy, short-range (<100 µm; 2-10–cell diameters) alpha particles, and was recently approved by the US Food and Drug Administration for the treatment of patients with castration-resistant prostate cancer (CRPC) and symptomatic bone metastases. In the randomized, phase 3 ALSYMPCA (Alpharadin in Symptomatic Prostate Cancer) trial, radium-223 was shown to prolong overall survival (OS) (median, 14.9 months vs 11.3 months; hazard ratio [HR] = 0.70; 95% confidence interval [CI], 0.58-0.83) and time to first symptomatic skeletal event (SSE) (median, 15.6 months vs 9.8 months; HR = 0.66; 95% CI, 0.52-0.83) among patients with bone-metastatic CRPC, and was associated with a highly favorable safety profile.

Objectives: To present important handling, administration, safety, and patient counseling information obtained from ALSYMPCA concerning the use of radium-223 in patients with bone-metastatic CRPC.

Methods: Eligible ALSYMPCA patients had progressive, symptomatic CRPC with ≥2 bone metastases and no known visceral metastases; were receiving best standard of care; and had either previously received, were unfit to receive, or declined docetaxel. Patients were randomized 2:1 to 6 injections of radium-223 (50 kBq/kg intravenously every 4 weeks; n=614) or matching placebo (n=307). The primary end point was OS; secondary end points included SSEs and safety.

Results: Radium-223 is provided as a ready-to-use solution for intravenous administration, and requires only standard radiation shielding and radiation protection restrictions during handling and administration. Patients are treated on an outpatient basis, with few limitations on personal contact; caregivers should wear gloves and wash their hands after handling patients’ bodily fluids or soiled clothes, and patients should dispose of bodily waste in a toilet whenever possible and wear condoms if sexually active. In ALSYMPCA, radium-223 was associated with a low incidence of myelosuppression (ie, thrombocytopenia, 12% vs 6%; neutropenia, 5% vs 1%) and gastrointestinal adverse events (ie, diarrhea, 25% vs 15%; vomiting, 18% vs 14%) compared with placebo. Given the potential for additive myelosuppression, concomitant use of radium-223 with chemotherapy, other systemic radioisotopes, or hemibody external radiotherapy is not recommended. Patients should be counseled to be compliant with blood cell count monitoring appointments while receiving radium-223, and patients with evidence of compromised bone marrow should be monitored closely for hematologic adverse events.

Conclusions: Radium-223 is a novel, safe, and effective treatment for patients with CRPC with bone metastases. As with other radiopharmaceuticals, care should be taken to minimize external exposure to radium-223, and potential bone marrow toxicity should be monitored prior to each dose.

Related Articles
Assessment of Side Effects (SEs) Impacting Quality of Life (QOL) in Patients (Pts) Undergoing Treatment (tx) for Advanced Breast Cancer (ABC) in Clinical Practice: A Real-World (RW) Multicountry Survey
November 2022 Vol 13, No 11
To examine how SEs impacting QOL in pts with ABC are perceived.
Intracranial Activity of Tepotinib in Patients with MET Exon 14 (METex14) Skipping Non–Small-Cell Lung Cancer (NSCLC) Enrolled in VISION
November 2022 Vol 13, No 11
To provide analysis of the intracranial activity of tepotinib in patients with METex14 skipping NSCLC with BM from the VISION study to aid oncology nurse navigators who manage this population of patients.
MOMENTUM: Phase 3 Randomized Study of Momelotinib (MMB) versus Danazol (DAN) in Symptomatic and Anemic Myelofibrosis (MF) Patients Previously Treated with a JAK Inhibitor
November 2022 Vol 13, No 11
MF is a rare bone marrow cancer characterized by fibrosis, abnormal blood cell production, and dysregulated JAK/STAT signaling.1,2
Last modified: August 10, 2023

Subscribe Today!

To sign up for our print publication or e-newsletter, please enter your contact information below.

I'd like to receive:

  • First Name *
    Last Name *
    Profession or Role
    Primary Specialty or Disease State