Top C1. Physician–Patient Discourse on Side Effects Related to Metastatic Breast Cancer Treatment: The “Make Your Dialogue Count” Survey C2. Emotional and Psychological Characteristics of Women with Triple-Negative Breast Cancer: [ Read More ]
August 2015 VOL 6 NO 4
Category I: Patient Education
- B1. Encouraging and Supporting Educational Events for Young Women with Breast Cancer in Their Local Community: The Young Empowered Survivors Fund
- B2. Evidenced-Based Approach to Adolescent and Young Adult Cancer Care
- B3. Integrative Medicine for Patients with Cancer and Caregivers
- B4. Journey to Survivorship: A Patient Guide to Treatment and Follow-Up Care
- B5. Managing Adverse Events with Ibrutinib in Mantle-Cell Lymphoma
- B6. Mindfulness Meditation, Body Scanning, and Visualization: Finding Peace While Living with Cancer
- B7. Oral Chemotherapy: Patient Education and Nursing Intervention
- B8. Oral Therapy Support Class: A Team Approach to Patient Education
- B9. Prepping for Pre-Op: A Breast Surgery Class
- B10. Restoring Hematologic Function and Quality of Life with Ibrutinib in Patients with Previously Treated Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma
- B11. Touching Others Using Caring Hands: Graduate Students Learn Patient Navigation Skills for Cancer Survivors
B1 Encouraging and Supporting Educational Events for Young Women with Breast Cancer in Their Local Community: The Young Empowered Survivors Fund
Medha Sutliff, MS1; Michelle Esser, JD, MBA1; Lori Atkinson2; Nicole Taylor1; Christina Stephens, MSW3; Jean Rowe, LCSW, OSW-C, CJT3; Stacey Lewis, CHES1
1Young Survival Coalition, New York, NY; 2Young Survival Coalition, Indianapolis, IN; 3Young Survival Coalition, Atlanta, GA
Background: Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women with breast cancer. Young women diagnosed with breast cancer have a strong desire to connect in person with other young survivors. In 2013, YSC eliminated its affiliate structure and launched its Face 2 Face (F2F) Network program, which allows a young survivor located anywhere in the country to start her own F2F network to connect young survivors in her community. These YSC volunteer leaders sought to provide educational events on unique topics to their local young survivors, but, with the elimination of YSC affiliates, lacked funding.
Objectives: To create a programmatic initiative that encourages and financially supports young women diagnosed with breast cancer to volunteer to organize events with an educational focus that not only promotes the mission of YSC but also allows survivors a time to network, share resources, and receive education.
Methods: In 2013, YSC developed and initiated its Young Empowered Survivors (YES) Fund, which allows any established F2F member or a current YSC State Leader to organize an educational event and receive up to $2000 annually ($500 quarterly) in funding on a reimbursement basis. Interested survivors submitted an application and proposed budget at least 30 days before the event. After the approved event was held, the survivor submitted receipts and expense reports to the YSC YES Fund coordinator to receive reimbursement. YES funds may be used for educational materials, meeting costs, supplies and equipment, speaker honoraria, as well as food and other direct program expenses.
Results: To date, 78 YES Fund events have occurred, with 854 known attendees. The diverse event topics included nutrition, fitness/wellness, sexuality/intimacy, personal care, the environment, and survivorship. In a recent survey of F2F members, 89% stated that they enjoyed the events/guest speakers. A survey of YES Fund event organizers found that some aspects were “easy” or “very easy,” including the application process (69%), reimbursement process (66%), and formulating program ideas (90%). Ninety-seven percent of organizers said their events were a “success” and 100% felt the attendees enjoyed the event. The financial cap of the program was deemed adequate (46%), great (33%), or too low (21%). Suggestions for the program included creating general recommendations for topics and speakers, the ability to pool quarterly funds for a higher-budget event, YSC paying vendors directly instead of requiring a reimbursement process, and an online reimbursement form.
Conclusion: YSC’s YES Fund is a novel method of encouraging and financially supporting educational programs for young women diagnosed with breast cancer on the local level, bringing high-quality programming and support to this unique and underserved population.
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Amelia Baffa, RN, MSN
University Hospital Rainbow Babies & Children’s Case Medical Center, Cleveland, OH
Background: Despite advances in cancer treatment during the past 20 years, there has been no significant improvement in treatments for adolescent and young adult (AYA) patients with cancer. The main reasons are a low rate of participating in clinical trials, differences in disease biology, lack of standardization of care, poor adherence to therapy, lack of health insurance, delayed diagnosis, and physicians’ unfamiliarity with cancer in the AYA population, according to the National Comprehensive Cancer Network (NCCN) patient guidelines, V. 02.2015. The nurse navigator focuses on evidenced-based care, addressing issues specific to this patient population.
Objectives: To describe the role of the nurse navigator in AYA cancer care, including utilizing the NCCN supportive care guidelines to increase awareness of AYA issues, identifying patient needs, and making recommendations based on the NCCN supportive standards related to access to healthcare and insurance, participation in clinical trials, fertility preservation before cancer therapy, psychosocial and behavioral support, screening, survivorship surveillance and support, and palliative care.
Methods: We use supportive care guidelines to increase the awareness of AYA issues, identify patient needs, and make recommendations based on the NCCN supportive care standards.
Results: In 2014, the University Hospital Rainbow Babies & Children’s Case Medical Center in Cleveland, OH, had 259 AYA patients, and in the University Hospitals Seidman Cancer Center Case Medical Center, 686 AYA patients are active in the system. This includes newly diagnosed patients and those in surveillance and survivorship. The AYA population faces issues with fertility preservation, their relationships, school, career, and psychosocial issues, such as anxiety and depression. Many of them are redefining who they are and restructuring their lives. The role of the navigator is to help patients face these issues by using an evidenced-based psychosocial approach. In 2014, the navigator assisted more than 140 patients in the pediatric cancer center, and 92 patients and families in the adult hospital. Using the NCCN AYA guidelines, the navigator focused on the key components of quality AYA care, including the right to fertility preservation before cancer treatment, the right to healthcare, the right to psychosocial and age-appropriate care, and supporting them as they move into survivorship.
Conclusion: The role of nurse navigation in the young adult cancer population is new and emerging. It requires the navigator to be knowledgeable about pediatric and adult oncology, as well as be adaptive to development in patients ranging from adolescents to young adults. This is necessary to create standards of care that are evidenced-based and supported by the nurse’s scope of practice. The navigator achieves this by assessing the needs of patients and their families, ensuring prompt access to and coordination of available resources, education, and clinical research opportunities.
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Lisa Hartman, RN, MA1; Richard Krumdieck, MD2
1Lake Norman Regional Medical Center, Mooresville, NC; 2Lake Norman Oncology, Lake Norman Regional Medical Center, Mooresville, NC
Background: Integrative medicine has blossomed and is accessible in large cancer centers. Creating an integrative medicine program in a community hospital requires creativity. In an effort to connect patients with cancer and caregivers to integrative therapies, our community developed a “virtual” integrative medicine program.
Objective: To develop the Lake Norman Integrative Medicine Program by finding reputable practitioners in the community and by developing a referral process.
Methods: The first step in development was to distinguish which integrative therapies to include, and to find reputable practitioners within the community who were knowledgeable about cancer care and expressed a desire to work with these patients. We partnered with yoga, acupuncture, Reiki, exercise, music therapy, nutrition, massage therapy, biofeedback, physical therapy, and counseling specialists. They donated their time for meetings, assisted with referral process creation, and priced their services at reduced rates. Referrals began in November 2014. It was determined that the oncology nurse navigator would serve as a liaison between the medical oncologist, the patient, and the integrative practitioner, and would be responsible for determining referral requests, faxing referrals, tracking, and receiving feedback. We also developed a corresponding education series to demystify these practices and allow patients to meet with each practitioner, learn about the therapy, and request a referral. A year-long schedule was created, and each integrative medicine specialist agreed to develop a presentation. The marketing of this program was community-wide.
Results: From November 2014 to May 2015, 36 patients received a referral. The majority of patients requested assistance with chronic issues, such as fatigue, pain, and anxiety. Most newly diagnosed patients requested nutrition support. Because patients can request multiple referrals, the total number of referrals was 60. Of the 36 patients, 78% were women and 22% were men. The 60 referrals were dispersed into groups, including yoga (25%), nutrition (18%), acupuncture (15%), education series (15%), exercise (12%), Reiki (7%), massage therapy (5%), counseling (3%), music therapy (0%), and biofeedback (0%). The education series began in February 2015, and in the first 3 presentations, attendance varied between 15 and 30 persons. For patients who requested referral but did not participate, the most frequently documented reason was cost, even with a reduced rate. To offset the cost, the program has proposed a grant writing initiative so we can offer scholarships.
Conclusion: Integrative medicine has value for patients with cancer, and the feedback regarding our program has been positive.
Patricia Zant, RN, BSN, OCN; Heidi Bentos-Pereira, RN, MSN, MBA, OCN
The Cancer Institute at St. Francis Hospital, Roslyn, NY
Background: For many patients, survivorship begins with a diagnosis of cancer. Patients become immersed in a sea of complex information, testing, and treatment recommendations. Our oncology nursing staff identified the lack of a consistent approach to provide patient education and a real-time treatment summary. This stimulated the development of “My Journey: A Patient Treatment Guide” for The Cancer Institute at St. Francis Hospital. The transition from active treatment to posttreatment care is critical to the health of cancer survivors, according to the 2006 survivorship monograph from the Institute of Medicine. Developing an interactive binder to document treatment received and to outline a plan to address posttreatment needs offers patients a clear path to the next steps, and is designed to follow them throughout their cancer journey. Providing the binder at diagnosis is expected to improve coordination of care and potentially lead to greater patient satisfaction and an enhanced experience.
Objectives: To develop and implement a patient-focused tool—the “journey binder”—to provide consistent education materials and concurrently create a summary of care and a follow-up plan for oncology patients.
Methods: A multidisciplinary team convened to review available education tools and evidence-based guidelines. Binder content includes sections to record diagnostic testing, treatment, side effects, and management strategies; a calendar; and information on psychosocial issues, resources, nutrition, healthy behaviors, health maintenance, and screening recommendations. Educational information was adapted from the American Cancer Society and the National Cancer Institute. The journey binder was endorsed by the medical oncology director and multidiscipline Cancer Committee at The Cancer Institute at St. Francis Hospital. The binder is introduced through the navigation process and is an ongoing collaborative activity between the patient and the oncology team, using educational content and updates entered at treatment and medical follow-up appointments.
Results: The response from patients, caregivers, and staff was favorable, with emphasis on binder organization and information flow. A patient satisfaction survey was created to evaluate the usefulness and effectiveness of the journey binder. A total of 61 surveys were distributed, with a 31% response rate. All respondents indicated a high level of satisfaction and would recommend the binder to others. To date, 200 journey binders have been distributed. Spanish translation of the binder is now available. An electronic version is under consideration.
Conclusion: Providing a tool to build an ongoing treatment summary and a plan for follow-up after cancer treatment is vital for enhancing the patient experience and knowledge. The binder provides essential information for all healthcare providers who interact with the patient. The use of this framework may assist other oncology nurses in developing a similar tool to meet patients’ needs.
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Maria Badillo, MSN, RN1; Alison Bender, PA-C2; Mei Cheng, PhD3; Nora Cavazos, MD3; Jacqueline Barrientos, MD2; Michael L. Wang, MD1
1The University of Texas MD Anderson Cancer Center, Houston; 2Hofstra North Shore-Long Island Jewish School of Medicine, Hempstead, NY; 3Pharmacyclics, Inc, Sunnyvale, CA
Background: Mantle-cell lymphoma (MCL) is usually treated with intravenous chemotherapy, which can be difficult for some patients to tolerate. Ibrutinib, a novel targeted therapy against the B-cell receptor pathway, is approved by the US Food and Drug Administration as a single-agent treatment for patients with MCL who have received at least 1 prior therapy. Ibrutinib is an oral treatment taken once daily at a dose of 560 mg (4 capsules) until disease progression or unacceptable toxicity. Unlike with chemotherapy, patients continue taking ibrutinib on a long-term basis with periodic follow-up clinic visits. Ibrutinib’s adverse events (AEs) profile is also different from that of chemotherapy. Nurse navigators play an important role in patient education regarding compliance and AE management with ibrutinib.
Objectives: To identify AEs observed with long-term ibrutinib use and to provide nurse navigators with guidance on patient education targeting management of these AEs.
Methods: We reviewed the results of a phase 2 study of 111 patients with relapsed/refractory MCL who were treated with ibrutinib to identify the most common AEs associated with long-term use of ibrutinib.
Results: Patients were followed for a median of 27 months, with 46% taking ibrutinib for >1 year and 20% for ≥2 years. Ibrutinib was generally well tolerated, with no unforeseen AEs. Only 11% of patients discontinued treatment because of AEs. AE rates were higher during the first 6 months of treatment. Diarrhea, which was observed in 54% of patients, was primarily low grade and was treated with over-the-counter medications. Only 1 patient required hospitalization, and no patients discontinued therapy because of unmanageable diarrhea. Bleeding events, including bruising, were reported in 50% of patients; anticoagulant use was associated with an increased risk for bleeding. A benefit–risk assessment should be made when evaluating ibrutinib therapy in patients requiring anticoagulants. Atrial fibrillation was reported in 11% of patients overall, and patients continued on ibrutinib with appropriate antiarrhythmic treatment. Grade ≥3 infection was reported in 28% of patients; most patients with infections were treated with antibiotics in outpatient clinics. Patients should be educated about the common symptoms of infection, such as fever, which require immediate medical attention. Grade ≥3 hematologic AEs occurred in <20% of patients; a minority of patients needed hematopoietic growth factors or transfusions. Patients should be instructed to have their blood counts monitored regularly.
Conclusion: Ibrutinib used on a long-term basis has a manageable safety profile in patients with relapsed/refractory MCL. Nurse navigators can play an important role in maximizing patients’ benefit from ibrutinib through patient education, ensuring patients adhere to ibrutinib’s long-term schedule, and monitoring and managing potential AEs. Because patients using ibrutinib will see their nurse navigator or physician less frequently than if they were treated with chemotherapy, it is key for nurse navigators to establish follow-up care and communication plans with patients, making certain that patients know when to contact their care team with any questions or concerns.
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Peter Vajda, PhD
True North Partnering, Atlanta, GA
Background: Using mindfulness meditation, body scanning, and visualization exercises have positive effects and benefits on the emotional, physical, and mental health, and overall well-being of cancer survivors. Participants in such activities will understand the concepts of mindfulness meditation and visualization, as well as the science that explains how and why patients can remain stuck in negative emotions, negative thoughts, and negative physiologic states and behaviors that interfere with their coping and survival. They also understand the science that supports the concept of accessing positive states of contentment, peace, love, hope, closeness, and excitement, which can make the cancer journey more manageable physically and mentally.
Objectives: To have participants (1) become aware of the research supporting the positive effects and benefits of mindfulness meditation, body scanning, and visualization; (2) understand their concepts; (3) understand the science behind how patients can become stuck in negative behaviors; (4) understand the science behind how patients can access positive behaviors; and (5) engage in mindfulness meditation, body scanning, and visualization exercises.
Methods: In this 90-minute presentation, participants engage in 3 experiential and guided exercises, including mindfulness meditation, a mindfulness body-scanning practice, and a visualization practice that is intended to support patients in healing whatever they feel needs healing in their lives. Participants are asked to volunteer examples of their programmed “negative” thoughts, beliefs, assumptions, expectations, or stories they get caught up in, which drive their behavior and reactivity toward their relationship to cancer and cancer-related events, or other areas in their life. They are asked to volunteer what it would be like if these elements were not driving their experience or their perceptions, what that would feel like, and what would they say about their perceptions. They are then guided through an 11-minute mindfulness body-scanning exercise. On completing the exercise, participants express what they are feeling based on a “vocabulary of emotions” worksheet they are given, and are asked to indicate what physiologic sensations they experience based on a list of physiological sensations. They draw their own conclusions about the effects of the exercise on their mental, affective, and physiologic states. Participants are asked to recall their experiences with cancer, survivorship, or other life areas when they experienced fear, anxiety, trepidation, worry, or concern at a level between 4 and 6 on a scale of 1 (low) to 10 (high). They are then guided through an 11-minute visualization. At the end of this exercise, they express what they are feeling and describe their physiologic sensations.
Results: These methods have been shown to result in self-reported positive effects on mood, physiologic states, and mental states regarding some of the participants’ experiences with cancer, such as pain, treatment, their relationship with their physicians and support staff, empathy with other cancer survivors, coping, sleep, or stress.
Conclusion: Participants in this program draw their own conclusions regarding the effect of these exercises on their mental, affective, and physiologic states.
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Cheryl Bellomo, MSN, RN, OCN, CN-BN
Intermountain Southwest Cancer Center, Valley View Medical Center, Cedar City, UT
Background: With the cancer treatment paradigm shifting from the use of infusion chemotherapy that is administered in a clinical setting by oncology nurses to the use of oral chemotherapy that is self-administered by patients in the home setting, adherence to therapy and symptom management become challenges in ensuring safe, quality care for patients with cancer. At Valley View Medical Center, a gap existed in the education, continuing nursing assessment, and follow-up of patients receiving oral chemotherapy regarding symptom management and adherence. A review of the literature demonstrated the effectiveness of the use of tailored nursing interventions in addition to patient education in improving symptom management and adherence for patients receiving oral chemotherapy.
Objective: To describe a pilot project designed to improve nurses’ education and intervention to promote effective symptom management in patients receiving oral chemotherapy.
Methods: To enhance the education of patients receiving oral chemotherapy agents, a patient-centered assessment and education protocol using the Multinational Association for Supportive Care in Cancer Oral Agent Teaching Tool (MOATT) was implemented by the oncology nurse navigator. Before the initiation of oral chemotherapy, patients met with the oncology nurse navigator for education. During the education session, the oncology nurse navigator provided information regarding oral chemotherapy using the 4 sections of MOATT. A tailored nurse follow-up telephone call protocol for the continual assessment of symptom management and adherence was implemented by the oncology nurse navigator. Patients receiving oral chemotherapy received a phone call weekly for the first month of initiating treatment, twice monthly for the second and third months, and then monthly for the course of their treatment. During the telephone conversations, using the Adherence Starts with Knowledge (ASK)-12 tool, the oncology nurse navigator assessed barriers or facilitators to the patient’s adherence and addressed symptoms and side effects. The patients’ responses were used to develop tailored adherence and symptom management strategies to meet patients’ individual needs.
Results: During the 3-month pilot project of the 2 protocols, 24 patients initiated oral chemotherapy. All 24 patients received patient-centered education, continual nursing assessment, and follow-up telephone calls to assess and promote symptom management and adherence. Based on the responses to structured questions and the ASK-12 tool, all patients reported that the education program, the individualized written information, and the follow-up telephone contact reinforced their knowledge and understanding of their oral chemotherapy as well as enhanced their comfort level in being able to manage and adhere to their treatment.
Conclusion: The 2 processes were effective in promoting symptom management and adherence during the pilot project and have become standard practice for oral chemotherapy patients at Valley View Medical Center.
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Katie Wahler, BSN, RN, OCN; Deborah Christensen, BSN, RN, OCN
Intermountain Southwest Cancer Center, St. George, UT
Background: More than 25% of oncology pipeline drugs are taken orally, many of which are targeted therapies. The high cost of these medications, differences in side effects from traditional chemotherapeutic agents, and increased patient responsibility motivated nurse navigators at Intermountain Southwest Cancer Center to create an educational intervention to support and meet the unique needs of these patients.
Objectives: The overarching goals of the Oral Therapy Support Class were to offer education, resources, and support to patients receiving oral cancer treatment. Objectives included (1) offer an all-inclusive set of classes led by key healthcare professionals, (2) provide impor-tant and relevant education and resources to patients and their caregivers, (3) increase patients’ adherence to oral medications, (4) increase patients’ feelings of support and understanding about their cancer treatment, and (5) have 40% of identified patients using oral medications for cancer treatment attend the class.
Methods: A multidisciplinary team composed of nurse navigators, a licensed clinical social worker, pharmacists, and a patient financial advocate collaborated on an educational support class. The Oral Therapy Support Class is offered in 3 consecutive weekly sessions facilitated by the nurse navigators. Each week, a different member of the team presents helpful information. In the first week, emotional needs, motivation, survivorship issues, and community resources are covered by the licensed clinical social worker. A unique opportunity for patients to ask questions of the pharmacist is offered in the second week. Resources and information on types of drugs, reading medication labels, medication reconciliation, and a prepared list of potential medication interactions for each patient with recommendations are given. At the final session, information on specialty pharmacies, drug delivery, insurance benefits, and financial resources, including pertinent information tailored to each patient, is presented by the financial advocate.
Results: Since the inception of the class in May 2014, 10 classes have been held. Participants were asked to respond to the ASK-20 adherence barrier survey, a validated questionnaire that identifies risk factors for nonadherence, before and after the class. These data were analyzed by a Wilcoxon signed rank test (N = 15). Results showed that patients more strongly agreed that they had someone they could call with questions about their medications after the class (pretest mean, 3.93; standard deviation [SD], .88; posttest mean, 4.67; SD, .49), which was statistically significant (α = .05; P = .012). Other responses, despite the lack of statistical significance, had overall positive improvement. Furthermore, quantitative and qualitative data from satisfaction surveys revealed high satisfaction rates, with overall satisfaction with the class at 4.77 (N = 30). Qualitatively, patients responded with positive remarks, and their feedback was used to improve class structure. Attendance rates for the 10 classes averaged 36%.
Conclusion: The creation of an educational support class led to improved navigation and support for patients receiving oral cancer therapy. A multidisciplinary approach allowed patients access to important and varied resources for their care. Results after the first year validated the significance of the class, and the class continues on a monthly basis.
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Cindy Simpson Wise, MSN, OCN
Levine Cancer Institute-Concord, Carolinas HealthCare System, NC
Background: The American Cancer Society estimated that 231,840 new cases of invasive breast cancer will be diagnosed in the United States in 2015. Breast cancer is the most frequently diagnosed cancer in women in the United States and the most common cancer diagnosis among the patients we care for at the Levine Cancer Institute-Concord. Most patients will undergo some type of surgery. Many survivors shared their desire for more information before surgery about preparing for breast surgery and what to expect after surgery. “Prepping for Pre-Op: A Breast Surgery Class” was developed for patients preparing to undergo surgery for breast cancer. The class content and objectives are based on questions from breast cancer survivors, information from the breast care team, and breast cancer resources.
Objective: To provide information about what to expect before and after surgery for breast cancer.
Methods: “Prepping for Pre-Op: A Breast Surgery Class” was developed using the Plan, Do, Study, Act method. A literature review revealed little evidence on the effectiveness of such a class. This class is offered weekly over 1 hour and is presented by our breast nurse navigator team. The content of the class includes a presentation, discussion, questions and answers, and tactile learning using postsurgical care items, such as bras, prostheses, and drains. Objectives for the class include providing information on breast cancer and treatment, as well as on preparing for breast surgery, describing the process for the day of surgery, discussing follow-up postsurgery, providing information on postoperative care items and resources to individuals undergoing breast surgery, and listing information on support resources for patients with breast cancer. Topics include preoperative preparations, surgery day preparation, postoperative care, and follow-up. Information about the class is provided to patients at the time of diagnosis, and flyers are distributed in all breast care areas. Information is also provided in our care package, which is given to all our patients who are newly diagnosed with breast cancer.
Results: The class content and delivery are evaluated by attendees using a Likert scale. All attendees (100%) have consistently rated all 6 categories based on the objectives of the class, with a score of 5, namely, “exceeds expectations.” Although the original intent of the class was to inform patients and families, one outcome reported by attendees was that the class had also served as a source of peer and psychosocial support that is integral to survivors.
Conclusion: “Prepping for Pre-Op: A Breast Surgery Class” is a valuable tool to educate patients and families about what to expect before and after breast surgery. Postsurgery, patients report benefiting from the information they received in this class, as evidenced by a consistent rating that all objectives exceed expectations. This is an area for future studies looking at the impact of the information taught in the class on postoperative outcomes and support.
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Nancy Driscoll, PA-C1; Gretchen McNally, PhD, ANP-BC2; Samuel Suzuki, MS, MBA3; Emily Hsu, PhD3; John C. Byrd, MD2; Jacqueline C. Barrientos, MD1
1North Shore Long Island Jewish Cancer Institute, Lake Success, NY; 2The Ohio State University Medical Center, Columbus; 3Pharmacyclics LLC, an AbbVie Company, Sunnyvale, CA
Background: Disease-related symptoms and treatment-related complications can profoundly affect quality of life (QOL) in patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). Ibrutinib has shown impressive single-agent efficacy and acceptable safety in a randomized phase 3 study (RESONATE) comparing ofatumumab in patients with previously treated CLL or SLL. Ibrutinib demonstrated a 78% reduction in the risk for progression as assessed by an Independent Review Committee (IRC) and a 57% reduction in the risk for death. Nurse navigators can educate patients about the importance and ease of ibrutinib adherence, as well as its long-term benefits.
Objectives: To evaluate the effects of ibrutinib on patients’ well-being, including hematologic function, QOL, and disease-related symptoms.
Methods: Patients randomized to ibrutinib (N = 195) were evaluated based on secondary and exploratory end points, including sustained hematologic improvement (≥56 days without the use of transfusions or growth factors), FACIT-Fatigue score (>3 points increase), and improvement in disease-related symptoms (change >1 grade postbaseline for >2 consecutive assessments). IRC-assessed computed tomography of reduction in lymph node and splenic enlargement is reported as previously demonstrated.
Results: On the ibrutinib arm, 80% of patients with baseline cytopenias showed sustained improvement in blood counts. Patients with any baseline cytopenia showed sustained improvement in hemoglobin (73%), platelets (82%), and absolute neutrophil count (44%). Improved hemoglobin and platelet counts were sustained for 60 weeks. Clinically meaningful improvement in FACIT-Fatigue score was achieved in the majority of patients (56%). After a transient increase, absolute lymphocyte count declined to a median of 50% below baseline at 24 weeks and continued to decrease to normal. A >50% reduction in lymph node and splenic enlargement was observed in 92% and 85% of patients, respectively. All patients (100%) showed improvement for weight loss, 70% for fatigue, 89% for night sweats, 96% for abdominal pain, and 100% for anorexia. The safety profile was consistent with previous reports.
Conclusion: Ibrutinib restores patients’ well-being while prolonging survival. Nurse navigators should educate patients about the enduring improvements in QOL that they will likely experience with ibrutinib, and emphasize adherence to dosing schedules as appropriate (eg, take the full dose daily). Because ibrutinib is taken orally, patients can reap these QOL and survival benefits without spending valuable time in a clinic for infusions.
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Yashika Watkins, PhD, MPH1; Fornessa Randal, MCRP1; Gina Curry, BSPH1; Kristin Moulden, LMT2; Thomas Britt, MD, MPH1; Karen E. Kim, MD, MS3
1Department of Health Studies and Health Information Administration, Chicago State University, IL; 2LMT, Chicago, IL; 3Division of the Biological Sciences, University of Chicago Comprehensive Care Center, Office of Community Engagement and Cancer Disparities, IL
Background: The Chicago Southside Cancer Disparities Initiative (CSCDI) joins Chicago State University (CSU), a minority-serving institution, and the University of Chicago Comprehensive Cancer Center in providing a foundation of cancer and public health research education for underrepresented minority Master of Public Health (MPH) and nursing students and the community members. The partnership targets the cancer disparities issues disproportionately affecting Chicago’s Southside residents. CSU’s MPH program has included cancer education training for patients as part of the curriculum for public health students. We focus on a program designed to train patients and future public health professionals on the importance of place-based cancer survivor patient navigation education—the Touching Others Using Caring Hands (TOUCH) program. Given the shortage of effective cancer survivorship support at the community level on the Southside of Chicago, the CSCDI seeks to engage graduate or postgraduate trainees and the community members.
Objectives: The objectives of the qualitative TOUCH program are (1) to train MPH students with community health and nursing backgrounds as patient education navigators for community-based cancer survivor programs, (2) to provide community-based patient education for cancer survivors in a familiar setting, (3) to determine whether the familiarity with the setting will increase the amount of participation and reduce attrition, (4) to explore how the TOUCH program provides support for cancer survivors and caregivers, (5) to explain the process for effective development of community-based survivorship programs, and (6) to engage cancer survivor caregivers in massage therapy techniques designed to comfort the cancer survivor.
Methods: During multiple town hall meetings and outreach activities, select faith-based community partners expressed concern about cancer survivors within their congregation not having access to local, community-based cancer support groups and patient education. CSU’s MPH leadership engaged faculty to develop a combined education course that could teach the MPH students aspects of navigating patients with cancer and patient education programming, as well as provide local cancer survivor education for community members. The instructional meetings were divided into 3 sessions, a massage therapist was selected, and all cancer survivors were prescreened. Students were allowed to participate in the 3-session program for cancer survivors and their caregivers to observe the program planning and logistics and the interaction with the massage therapist and community partners. Cancer survivors and their caregivers were asked questions at the beginning of the instructional sessions to determine their level of comfort during current, if any, cancer treatment, their level of stress, and the importance of cancer caregivers in the survivorship process. Students were onsite to observe and participate in the hands-on sessions.
Results: Local community-based cancer education programming has had a tremendous impact on Chicago’s Southside community of Washington Heights. Community members and cancer survivor participants in the TOUCH program were asked 5 questions pertaining to their experience with the program, including (1) Have you attended local survivorship programs in your community? (2) How important was the geographic location of the program in determining your participation? (3) The session was held at a local church. How important was that in your decision to attend? (4) Would you have attended this session at a neighborhood clinic? (5) Did the church leadership have any influence on your attendance/participation? During the discussion, 83% of participants indicated that they had never participated in cancer survivor programs in their neighborhoods. Moreover, all participants indicated that the geographic location was very important. A total of 67% of participants concluded that they would not have taken this class at a local clinic. Among the church leadership, 83% indicated that they were influenced to join the sessions. Finally, participants indicated that the session being held close to home, in a familiar setting, and at a congregation gave them more confidence in attending the session and more trust that the information was going to be accurate. Utilizing the immediate community outside of the learning institutions creates a paradigm shift in student instruction and the learning environment. The students (N = 8) involved in the touch caring sessions were asked (1) How did participation in a community-based, hands-on, real-life setting benefit your learning experience? (2) How will this learning experience inform your future community health/intervention/research planning? (3) Provide comments on your on-campus (classroom setting) versus off-campus (community-based setting) experience. All students indicated that the real-life setting with cancer survivors was the most beneficial way of teaching this public health issue. Some of the comments provided that “live interaction is the best teacher,” “interaction with a cancer survivor cannot be taught from a book,” and hearing live testimonies increased and solidified their desire to continue in the field.
Conclusion: The training of public health and nursing students in community-based settings is critical to the establishment of future healthcare professionals who are culturally and demographically sensitive and balanced. Principles of community-based participatory research highlight the importance of building relationships of mutual trust among community partners and emphasize hands-on teaching. The TOUCH program provides ongoing opportunities for cancer survivorship programming, as well as cancer disparities education for MPH and registered nurse trainees. In addition, these types of innovative programs can help provide alternative support for cancer survivors in underrepresented minority communities. The Washington Heights community has more than 200 religious organizations and a very limited amount of healthcare providers; therefore, faith-based organizations have become another option for health support programming to reduce health disparities and provide patient education programming in a local setting. Churches or a person’s religious faith, which are rich in the African-American community, are being combined with training to examine the effects of faith on the cancer survivor program outcomes and the ease of patient navigation training for future public health professionals.
Top D1. Application of Lean Methodology to Improve Quality and Efficiency D2. Assessing and Understanding the Rehabilitation Needs of Patients with Cancer: A Rapid-Learning System Pilot D3. Bridging the Gap [ Read More ]