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VOL 3, NO 2
COMMUNITY OUTREACH Promoting Breast Health Awareness on College Campuses
ORIGINAL RESEARCH Breast Health Education and Cancer Awareness: A Community Hospital Embracing a Novel Approach
ORIGINAL RESEARCH Mujer a Mujer/Woman to Woman: Using a Unique Venue for Culturally Appropriate Outreach and Navigation in an Underserved Area to Increase Screening
WEB SITE REVIEW The National Comprehensive Cancer Network® and NCCN® Member Institutions
NAVIGATING PATIENTS ACROSS THE CONTINUUM OF CANCER CARE
© 2012 Green Hill Healthcare Communications, LLC
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NOW APPROVED FOR SUBCUTANEOUS ADMINISTRATION
Subcutaneous VELCADE Demonstrated Efficacy Consistent With IV for the Primary Endpoint RESPONSE RATES† IN RELAPSED MULTIPLE MYELOMA (MM): SUBCUTANEOUS AND IV AT 12 WEEKS (AFTER 4 CYCLES) Single-agent VELCADE® (bortezomib)
AT 24 WEEKS (AFTER 8 CYCLES) VELCADE±dexamethasone
7% 8% ORR Primary Endpoint
SC (n=148) IV (n=74)
▼ The study met its primary non-inferiority objective that single-agent subcutaneous VELCADE retained at least 60% of the overall response rate after 4 cycles relative to single-agent IV VELCADE SUBCUTANEOUS VS IV TRIAL: a non-inferiority, phase 3, randomized (2:1), open-label trial compared the efficacy and safety of VELCADE administered subcutaneously (n=148) with VELCADE administered intravenously (n=74) in patients with relapsed MM. The primary endpoint was overall response rate at 4 cycles. Secondary endpoints included response rate at 8 cycles, median TTP and PFS (months), 1-year overall survival (OS), and safety. *INDICATIONS: VELCADE is indicated for the treatment of patients with multiple myeloma. VELCADE is indicated for the treatment of patients with mantle cell lymphoma who have received at least 1 prior therapy. †
Responses were based on criteria established by the European Group for Blood and Marrow Transplantation.1
VELCADE IMPORTANT SAFETY INFORMATION CONTRAINDICATIONS VELCADE is contraindicated in patients with hypersensitivity to bortezomib, boron, or mannitol. VELCADE is contraindicated for intrathecal administration.
WARNINGS, PRECAUTIONS AND DRUG INTERACTIONS ▼ Peripheral neuropathy, including severe cases, may occur – manage with dose modification or discontinuation. Patients with preexisting severe neuropathy should be treated with VELCADE only after careful risk-benefit assessment ▼ Hypotension can occur. Use caution when treating patients receiving antihypertensives, those with a history of syncope, and those who are dehydrated ▼ Closely monitor patients with risk factors for, or existing heart disease ▼ Acute diffuse infiltrative pulmonary disease has been reported ▼ Nausea, diarrhea, constipation, and vomiting have occurred and may require use of antiemetic and antidiarrheal medications or fluid replacement ▼ Thrombocytopenia or neutropenia can occur; complete blood counts should be regularly monitored throughout treatment ▼ Tumor Lysis Syndrome, Reversible Posterior Leukoencephalopathy Syndrome, and Acute Hepatic Failure have been reported
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IN ALL INDICATIONS*
Difference in Incidence of Peripheral Neuropathy With Subcutaneous VELCADE PERIPHERAL NEUROPATHY (PN) IN RELAPSED MM: SUBCUTANEOUS AND IV GRADE ≥3
SC (n=147) IV (n=74)
16% ALL GRADES
38% 53% ▼ Starting VELCADE® (bortezomib) subcutaneously may be considered for patients with preexisting PN or patients at high risk for PN. Patients with preexisting severe neuropathy should be treated with VELCADE only after careful risk-benefit assessment ▼ Treatment with VELCADE may cause PN that is predominantly sensory. However, cases of severe sensory and motor PN have been reported. Patients should be monitored for symptoms of neuropathy, such as a burning sensation, hyperesthesia, hypoesthesia, paresthesia, discomfort, neuropathic pain, or weakness ▼ Patients experiencing new or worsening PN during therapy with VELCADE may require a decrease in the dose, a less-dose-intense schedule, or discontinuation. Please see full Prescribing Information for dose modification guidelines for PN
WARNINGS, PRECAUTIONS AND DRUG INTERACTIONS CONTINUED ▼ Women should avoid becoming pregnant while being treated with VELCADE. Pregnant women should be apprised of the potential harm to the fetus ▼ Closely monitor patients receiving VELCADE in combination with strong CYP3A4 inhibitors. Concomitant use of strong CYP3A4 inducers is not recommended
ADVERSE REACTIONS Most commonly reported adverse reactions (incidence ≥30%) in clinical studies include asthenic conditions, diarrhea, nausea, constipation, peripheral neuropathy, vomiting, pyrexia, thrombocytopenia, psychiatric disorders, anorexia and decreased appetite, neutropenia, neuralgia, leukopenia, and anemia. Other adverse reactions, including serious adverse reactions, have been reported
Please see Brief Summary for VELCADE on next page. For Patient Assistance Information or Reimbursement Assistance, call 1-866-VELCADE (835-2233), Option 2, or visit VELCADEHCP.com Reference: 1. Moreau P, Pylypenko H, Grosicki S, et al. Subcutaneous versus intravenous administration of bortezomib in patients with relapsed multiple myeloma: a randomised, phase 3, non-inferiority study. Lancet Oncol. 2011;12(5):431-440.
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Brief Summary INDICATIONS: VELCADE® (bortezomib) for Injection is indicated for the treatment of patients with multiple myeloma. VELCADE® (bortezomib) for Injection is indicated for the treatment of patients with mantle cell lymphoma who have received at least 1 prior therapy.
CONTRAINDICATIONS: VELCADE is contraindicated in patients with hypersensitivity to bortezomib, boron, or mannitol. VELCADE is contraindicated for intrathecal administration.
WARNINGS AND PRECAUTIONS: VELCADE should be administered under the supervision of a physician experienced in the use of antineoplastic therapy. Complete blood counts (CBC) should be monitored frequently during treatment with VELCADE. Peripheral Neuropathy: VELCADE treatment causes a peripheral neuropathy that is predominantly sensory. However, cases of severe sensory and motor peripheral neuropathy have been reported. Patients with pre-existing symptoms (numbness, pain or a burning feeling in the feet or hands) and/or signs of peripheral neuropathy may experience worsening peripheral neuropathy (including ≥ Grade 3) during treatment with VELCADE. Patients should be monitored for symptoms of neuropathy, such as a burning sensation, hyperesthesia, hypoesthesia, paresthesia, discomfort, neuropathic pain or weakness. In the Phase 3 relapsed multiple myeloma trial comparing VELCADE subcutaneous vs. intravenous the incidence of Grade ≥ 2 peripheral neuropathy events was 24% for subcutaneous and 41% for intravenous. Grade ≥ 3 peripheral neuropathy occurred in 6% of patients in the subcutaneous treatment group, compared with 16% in the intravenous treatment group. Starting VELCADE subcutaneously may be considered for patients with pre-existing or at high risk of peripheral neuropathy. Patients experiencing new or worsening peripheral neuropathy during VELCADE therapy may benefit from a decrease in the dose and/or a less dose-intense schedule. In the single agent phase 3 relapsed multiple myeloma study of VELCADE vs. Dexamethasone following dose adjustments, improvement in or resolution of peripheral neuropathy was reported in 51% of patients with ≥ Grade 2 peripheral neuropathy in the relapsed multiple myeloma study. Improvement in or resolution of peripheral neuropathy was reported in 73% of patients who discontinued due to Grade 2 neuropathy or who had ≥ Grade 3 peripheral neuropathy in the phase 2 multiple myeloma studies. The long-term outcome of peripheral neuropathy has not been studied in mantle cell lymphoma. Hypotension: The incidence of hypotension (postural, orthostatic, and hypotension NOS) was 13%. These events are observed throughout therapy. Caution should be used when treating patients with a history of syncope, patients receiving medications known to be associated with hypotension, and patients who are dehydrated. Management of orthostatic/ postural hypotension may include adjustment of antihypertensive medications, hydration, and administration of mineralocorticoids and/or sympathomimetics. Cardiac Disorders: Acute development or exacerbation of congestive heart failure and new onset of decreased left ventricular ejection fraction have been reported, including reports in patients with no risk factors for decreased left ventricular ejection fraction. Patients with risk factors for, or existing heart disease should be closely monitored. In the relapsed multiple myeloma study of VELCADE vs. dexamethasone, the incidence of any treatment-emergent cardiac disorder was 15% and 13% in the VELCADE and dexamethasone groups, respectively. The incidence of heart failure events (acute pulmonary edema, cardiac failure, congestive cardiac failure, cardiogenic shock, pulmonary edema) was similar in the VELCADE and dexamethasone groups, 5% and 4%, respectively. There have been
isolated cases of QT-interval prolongation in clinical studies; causality has not been established. Pulmonary Disorders: There have been reports of acute diffuse infiltrative pulmonary disease of unknown etiology such as pneumonitis, interstitial pneumonia, lung infiltration and Acute Respiratory Distress Syndrome (ARDS) in patients receiving VELCADE. Some of these events have been fatal. In a clinical trial, the first two patients given high-dose cytarabine (2 g/m2 per day) by continuous infusion with daunorubicin and VELCADE for relapsed acute myelogenous leukemia died of ARDS early in the course of therapy. There have been reports of pulmonary hypertension associated with VELCADE administration in the absence of left heart failure or significant pulmonary disease. In the event of new or worsening cardiopulmonary symptoms, a prompt comprehensive diagnostic evaluation should be conducted. Reversible Posterior Leukoencephalopathy Syndrome (RPLS): There have been reports of RPLS in patients receiving VELCADE. RPLS is a rare, reversible, neurological disorder which can present with seizure, hypertension, headache, lethargy, confusion, blindness, and other visual and neurological disturbances. Brain imaging, preferably MRI (Magnetic Resonance Imaging), is used to confirm the diagnosis. In patients developing RPLS, discontinue VELCADE. The safety of reinitiating VELCADE therapy in patients previously experiencing RPLS is not known. Gastrointestinal Adverse Events: VELCADE treatment can cause nausea, diarrhea, constipation, and vomiting sometimes requiring use of antiemetic and antidiarrheal medications. Ileus can occur. Fluid and electrolyte replacement should be administered to prevent dehydration. Thrombocytopenia/Neutropenia: VELCADE is associated with thrombocytopenia and neutropenia that follow a cyclical pattern with nadirs occurring following the last dose of each cycle and typically recovering prior to initiation of the subsequent cycle. The cyclical pattern of platelet and neutrophil decreases and recovery remained consistent over the 8 cycles of twice weekly dosing, and there was no evidence of cumulative thrombocytopenia or neutropenia. The mean platelet count nadir measured was approximately 40% of baseline. The severity of thrombocytopenia was related to pretreatment platelet count. In the relapsed multiple myeloma study of VELCADE vs. dexamethasone, the incidence of significant bleeding events (≥Grade 3) was similar on both the VELCADE (4%) and dexamethasone (5%) arms. Platelet counts should be monitored prior to each dose of VELCADE. Patients experiencing thrombocytopenia may require change in the dose and schedule of VELCADE. There have been reports of gastrointestinal and intracerebral hemorrhage in association with VELCADE. Transfusions may be considered. The incidence of febrile neutropenia was <1%. Tumor Lysis Syndrome: Because VELCADE is a cytotoxic agent and can rapidly kill malignant cells, the complications of tumor lysis syndrome may occur. Patients at risk of tumor lysis syndrome are those with high tumor burden prior to treatment. These patients should be monitored closely and appropriate precautions taken. Hepatic Events: Cases of acute liver failure have been reported in patients receiving multiple concomitant medications and with serious underlying medical conditions. Other reported hepatic events include increases in liver enzymes, hyperbilirubinemia, and hepatitis. Such changes may be reversible upon discontinuation of VELCADE. There is limited re-challenge information in these patients. Hepatic Impairment: Bortezomib is metabolized by liver enzymes. Bortezomib exposure is increased in patients with moderate or severe hepatic impairment; these patients should be treated with VELCADE at reduced starting doses and closely monitored for toxicities. (continued)
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Use in Pregnancy: Pregnancy Category D. Women of childbearing potential should avoid becoming pregnant while being treated with VELCADE (bortezomib). Bortezomib administered to rabbits during organogenesis at a dose approximately 0.5 times the clinical dose of 1.3 mg/m2 based on body surface area caused post-implantation loss and a decreased number of live fetuses.
ADVERSE EVENT DATA: Safety data from phase 2 and 3 studies of single-agent VELCADE 1.3 mg/m2/dose administered intravenously twice weekly for 2 weeks followed by a 10-day rest period in 1163 patients with previously treated multiple myeloma (N=1008, not including the phase 3, VELCADE plus DOXIL® [doxorubicin HCI liposome injection] study) and previously treated mantle cell lymphoma (N=155) were integrated and tabulated. In these studies, the safety profile of VELCADE was similar in patients with multiple myeloma and mantle cell lymphoma. In the integrated analysis, the most commonly reported adverse events were asthenic conditions (including fatigue, malaise, and weakness); (64%), nausea (55%), diarrhea (52%), constipation (41%), peripheral neuropathy NEC (including peripheral sensory neuropathy and peripheral neuropathy aggravated); (39%), thrombocytopenia and appetite decreased (including anorexia); (each 36%), pyrexia (34%), vomiting (33%), anemia (29%), edema (23%), headache, paresthesia and dysesthesia (each 22%), dyspnea (21%), cough and insomnia (each 20%), rash (18%), arthralgia (17%), neutropenia and dizziness (excluding vertigo); (each 17%), pain in limb and abdominal pain (each 15%), bone pain (14%), back pain and hypotension (each 13%), herpes zoster, nasopharyngitis, upper respiratory tract infection, myalgia and pneumonia (each 12%), muscle cramps (11%), and dehydration and anxiety (each 10%). Twenty percent (20%) of patients experienced at least 1 episode of ≥Grade 4 toxicity, most commonly thrombocytopenia (5%) and neutropenia (3%). A total of 50% of patients experienced serious adverse events (SAEs) during the studies. The most commonly reported SAEs included pneumonia (7%), pyrexia (6%), diarrhea (5%), vomiting (4%), and nausea, dehydration, dyspnea and thrombocytopenia (each 3%). In the phase 3 VELCADE + melphalan and prednisone study in previously untreated multiple myeloma, the safety profile of VELCADE administered intravenously in combination with melphalan/prednisone is consistent with the known safety profiles of both VELCADE and melphalan/ prednisone. The most commonly reported adverse events in this study (VELCADE+melphalan/prednisone vs melphalan/prednisone) were thrombocytopenia (52% vs 47%), neutropenia (49% vs 46%), nausea (48% vs 28%), peripheral neuropathy (47% vs 5%), diarrhea (46% vs 17%), anemia (43% vs 55%), constipation (37% vs 16%), neuralgia (36% vs 1%), leukopenia (33% vs 30%), vomiting (33% vs 16%), pyrexia (29% vs 19%), fatigue (29% vs 26%), lymphopenia (24% vs 17%), anorexia (23% vs 10%), asthenia (21% vs 18%), cough (21% vs 13%), insomnia (20% vs 13%), edema peripheral (20% vs 10%), rash (19% vs 7%), back pain (17% vs 18%), pneumonia (16% vs 11%), dizziness (16% vs 11%), dyspnea (15% vs 13%), headache (14% vs 10%), pain in extremity (14% vs 9%), abdominal pain (14% vs 7%), paresthesia (13% vs 4%), herpes zoster (13% vs 4%), bronchitis (13% vs 8%), hypokalemia (13% vs 7%), hypertension (13% vs 7%), abdominal pain upper (12% vs 9%), hypotension (12% vs 3%), dyspepsia (11% vs 7%), nasopharyngitis (11% vs 8%), bone pain (11% vs 10%), arthralgia (11% vs 15%) and pruritus (10% vs 5%). In the phase 3 VELCADE subcutaneous vs. intravenous study in relapsed multiple myeloma, safety data were similar between the two treatment groups. The most commonly reported adverse events in this study were peripheral neuropathy NEC (38% vs 53%), anemia (36% vs 35%), thrombocytopenia (35% vs 36%), neutropenia (29% vs 27%), diarrhea (24% vs 36%), neuralgia (24% vs 23%), leukopenia (20% vs 22%), pyrexia (19% vs 16%), nausea (18% vs 19%), asthenia (16% vs 19%), weight decreased (15% vs 3%), constipation (14% vs 15%), back pain (14% vs 11%), fatigue (12% vs 20%), vomiting (12% vs 16%), insomnia (12% vs 11%), herpes zoster (11% vs 9%), decreased appetite (10% vs 9%), hypertension (10% vs 4%), dyspnea (7% vs 12%), pain in extremities (5% vs 11%), abdominal pain and headache (each 3% vs 11%), abdominal pain upper (2% vs 11%). The incidence of serious adverse events was similar for the subcutaneous treatment group (36%) and the intravenous treatment group (35%). The most commonly reported SAEs
were pneumonia (6%) and pyrexia (3%) in the subcutaneous treatment group and pneumonia (7%), diarrhea (4%), peripheral sensory neuropathy (3%) and renal failure (3%) in the intravenous treatment group.
DRUG INTERACTIONS: Bortezomib is a substrate of cytochrome P450 enzyme 3A4, 2C19 and 1A2. Co-administration of ketoconazole, a strong CYP3A4 inhibitor, increased the exposure of bortezomib by 35% in 12 patients. Therefore, patients should be closely monitored when given bortezomib in combination with strong CYP3A4 inhibitors (e.g. ketoconazole, ritonavir). Co-administration of omeprazole, a strong inhibitor of CYP2C19, had no effect on the exposure of bortezomib in 17 patients. Co-administration of rifampin, a strong CYP3A4 inducer, is expected to decrease the exposure of bortezomib by at least 45%. Because the drug interaction study (n=6) was not designed to exert the maximum effect of rifampin on bortezomib PK, decreases greater than 45% may occur. Efficacy may be reduced when VELCADE (bortezomib) is used in combination with strong CYP3A4 inducers; therefore, concomitant use of strong CYP3A4 inducers is not recommended in patients receiving VELCADE. St. John’s Wort (Hypericum perforatum) may decrease bortezomib exposure unpredictably and should be avoided. Co-administration of dexamethasone, a weak CYP3A4 inducer, had no effect on the exposure of bortezomib in 7 patients. Co-administration of melphalan-prednisone increased the exposure of bortezomib by 17% in 21 patients. However, this increase is unlikely to be clinically relevant.
USE IN SPECIFIC POPULATIONS: Nursing Mothers: It is not known whether bortezomib is excreted in human milk. Because many drugs are excreted in human milk and because of the potential for serious adverse reactions in nursing infants from VELCADE, a decision should be made whether to discontinue nursing or to discontinue the drug, taking into account the importance of the drug to the mother. Pediatric Use: The safety and effectiveness of VELCADE in children has not been established. Geriatric Use: No overall differences in safety or effectiveness were observed between patients ≥age 65 and younger patients receiving VELCADE; but greater sensitivity of some older individuals cannot be ruled out. Patients with Renal Impairment: The pharmacokinetics of VELCADE are not influenced by the degree of renal impairment. Therefore, dosing adjustments of VELCADE are not necessary for patients with renal insufficiency. Since dialysis may reduce VELCADE concentrations, VELCADE should be administered after the dialysis procedure. For information concerning dosing of melphalan in patients with renal impairment, see manufacturer’s prescribing information. Patients with Hepatic Impairment: The exposure of bortezomib is increased in patients with moderate and severe hepatic impairment. Starting dose should be reduced in those patients. Patients with Diabetes: During clinical trials, hypoglycemia and hyperglycemia were reported in diabetic patients receiving oral hypoglycemics. Patients on oral antidiabetic agents receiving VELCADE treatment may require close monitoring of their blood glucose levels and adjustment of the dose of their antidiabetic medication. Please see full Prescribing Information for VELCADE at VELCADEHCP.com.
VELCADE, MILLENNIUM and are registered trademarks of Millennium Pharmaceuticals, Inc. Other trademarks are property of their respective owners. Millennium Pharmaceuticals, Inc., Cambridge, MA 02139 Copyright © 2012, Millennium Pharmaceuticals, Inc. All rights reserved. Printed in USA
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APRIL 2012 • VOL 3, NO 2
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By Lillie D. Shockney, RN, BS, MAS
firstname.lastname@example.org Journal of Oncology Navigation & Survivorship, ISSN 21660999 (print); ISSN 2166-0980 (online), is published 6 times a year by Green Hill Healthcare Communications, LLC, 241 Forsgate Drive, Suite 205C, Monroe Twp, NJ 08831. Telephone: 732.656.7935. Fax: 732.656.7938. Copyright ©2012 by Green Hill Healthcare Communications, LLC. All rights reserved. Journal of Oncology Navigation & Survivorship logo is a registered trademark of Green Hill Healthcare Communications, LLC. No part of this publication may be reproduced or transmitted in any form or by any means now or hereafter known, electronic or mechanical, including photocopy, recording, or any informational storage and retrieval system, without written permission from the publisher. Printed in the United States of America. EDITORIAL CORRESPONDENCE should be addressed to MANAGING EDITOR, Journal of Oncology Navigation & Survivorship (JONS), 241 Forsgate Drive, Suite 205C, Monroe Twp, NJ 08831. E-mail: email@example.com. YEARLY SUBSCRIPTION RATES: United States and possessions: individuals, $50.00; institutions, $90.00; single issues, $5.00. Orders will be billed at individual rate until proof of status is confirmed. Prices are subject to change without notice. Correspondence regarding permission to reprint all or part of any article published in this journal should be addressed to REPRINT PERMISSIONS DEPARTMENT, Green Hill Healthcare Communications, LLC, 241 Forsgate Drive, Suite 205C, Monroe Twp, NJ 08831. The ideas and opinions expressed in JONS do not necessarily reflect those of the editorial board, the editorial director, or the publisher. Publication of an advertisement or other product mention in JONS should not be construed as an endorsement of the product or the manufacturer’s claims. Readers are encouraged to contact the manufacturer with questions about the features or limitations of the products mentioned. Neither the editorial board nor the publisher assumes any responsibility for any injury and/or damage to persons or property arising out of or related to any use of the material contained in this periodical. The reader is advised to check the appropriate medical literature and the product information currently provided by the manufacturer of each drug to be administered to verify the dosage, the method and duration of administration, or contraindications. It is the responsibility of the treating physician or other healthcare professional, relying on independent experience and knowledge of the patient, to determine drug dosages and the best treatment for the patient. Every effort has been made to check generic and trade names, and to verify dosages. The ultimate responsibility, however, lies with the prescribing physician. Please convey any errors to the editorial director.
APRIL 2012 • VOLUME 3, ISSUE 2
Promoting Breast Health Awareness on College Campuses
Breast Health Education and Cancer Awareness: A Community Hospital Embracing a Novel Approach By Danelle Johnston, RN, BSN, OCN, CBCN
Mujer a Mujer/Woman to Woman: Using a Unique Venue for Culturally Appropriate Outreach and Navigation in an Underserved Area to Increase Screening By Sally Cascella, MAHSN, BSN, RN, CNOR Jacqueline Keren, MFA, BA
WEB SITE REVIEW
The National Comprehensive Cancer Network® and NCCN® Member Institutions By Lillie D. Shockney, RN, BS, MAS
ABOUT THE COVER The Unveiling Acrylic by a Healthcare Professional California Artwork from the Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition (www.LillyOncologyOnCanvas.com).
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NAVIGATION & SURVIVORSHIP
The Official Journal of the Academy of Oncology Nurse Navigators 速
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JONS_April 2012_v3_TON1110_FINAL 4/16/12 4:16 PM Page 8
LETTERS FROM LILLIE
Editor-in-Chief Lillie D. Shockney, RN, BS, MAS University Distinguished Service Associate Professor of Breast Cancer Depts of Surgery and Oncology Administrative Director, Johns Hopkins Breast Clinical Programs Administrative Director, Johns Hopkins Cancer Survivorship Programs Associate Professor, JHU School of Medicine, Depts of Surgery & Gynecology and Obstetrics Associate Professor, JHU School of Nursing
COMMUNITY OUTREACH CHALLENGE
Section Editors Breast Cancer Sharon Gentry, RN, MSN, AOCN, CBCN Breast Health Navigator Derrick L. Davis Forsyth Regional Cancer Center
Prostate Cancer Frank delaRama, RN, MS, AOCNS Clinical Nurse Specialist Oncology/Genomics Cancer Care Clinic Palo Alto Medical Foundation
Healthcare Disparities Linda Fleisher, PhD, MPH
Assistant Vice President Office of Health Communications & Health Disparities Assistant Professor Cancer Prevention & Control Fox Chase Cancer Center
Health Promotion and Outreach Iyaad Majed Hasan, MSN, FNP Director and Nurse Practitioner Survivorship Clinic and Program Cleveland Clinic Taussig Cancer Center
AONN Research Committee Marcy Poletti, RN, MSN
Program Administrator, Oncology Services Wake Forest University Baptist Medical Center
Elaine Sein, RN, BSN, OCN, CBCN Senior Project Manager Fox Chase Cancer Center Partners
Penny Widmaier, RN, MSN
s we begin to welcome spring, we are also welcoming the opportunity to Join together to design conduct more health fairs and other community outreach events to raise cancer methods to promote awareness. This issue contains an article cancer awareness... that is specifically focused on breast cancer awareness and educating women (and men) about the facts regarding breast health and breast cancer. What makes this article different is that it provides a bird’s-eye view of how to engage consumers in a fun way to learn, retain, and use information to help ensure their own breasts remain healthy. This is merely one way to creatively engage people in your local communities. So I want this example to serve as a challenge to all to get your creative juices flowing and invent interactive ways for you, other healthcare staff, and cancer survivor volunteers to develop and implement similar programs; join together to design methods to promote cancer awareness and healthy lifestyle behaviors to reduce the risk of getting cancer; and explore ways to instill the facts and undo the myths associated with various forms of cancer. Perhaps once your program is developed and implemented, you, too, can write an article for our editorial board to consider for a future issue of the journal. We are here to foster knowledge among all of you, and one of the best ways to do that is by sharing programs that have proven to be successful in carrying out our mission! If in your navigation role you are not personally involved in community outreach programs, please consider participating in a few. It helps consumers to know that if they do end up diagnosed with a particular type of cancer, there is someone like you who will be ready, willing, and able to guide them through. g
Nurse Navigator Botsford Cancer Center
With best regards,
The Journal of Oncology Navigation & Survivorship (JONS) promotes reliance on evidence-based practices in navigating patients with cancer and their caregivers through diagnosis, treatment, and survivorship. JONS also seeks to strengthen the role of nurse and patient navigators in cancer care by serving as a platform for these professionals to disseminate original research findings, exchange best practices, and find support for their growing community.
APRIL 2012 • VOLUME 3, ISSUE 2
Lillie D. Shockney, RN, BS, MAS Editor-in-Chief
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PROMOTING BREAST HEALTH AWARENESS ON COLLEGE CAMPUSES By Lillie D. Shockney, RN, BS, MAS
any young women, ages 18 to 22, are away from their parents, living on college campuses and exposed to lifestyle behaviors that can increase their risk of getting breast cancer. Now that they have come of age, this is also a group that begins to fear this disease, joining the millions of women worldwide who are afraid that one day they will be diagnosed with breast cancer. Many attempts have been made in the past to educate college-age women about breast health issues and most particularly breast cancer. The goal of these educational programs has historically fallen short due to low attendance and lack of measurable knowledge learned. Given that this is a challenging consumer group to reach and teach, in 2001, alpha Kappa Delta Phi, a small sorority at the Johns Hopkins University (JHU) Homewood campus, partnered with the Johns Hopkins Avon Foundation Breast Center to create a unique method of education and called it a Breastival™. Eighty flash cards were created (true/false and multiple choice), and 8 breast cancer organizations were recruited to have booths where the flash cards would be shown. When a student answered a question correctly, she advanced to the next booth. Students who answered a question at all 8 booths were rewarded with “booby prizes.” Not only was this first event successful, its success was measurable. We knew the number of students who came to the event (more than half of the students living on campus), which questions they answered correctly and incorrectly, how many visited every booth, and whether they wanted to receive e-mail reminders to mark their calendar each month to perform their breast self-exams. A list of the myths that students assumed were true (such as antiperspirants being the cause of breast cancer) were recorded and incorporated into teaching
activities provided later. Just a few days after this first Breastival was held, students from other college campuses across the United States (who were actually siblings of JHU students) began calling the Director of the Breast Center inquiring how they could hold a Breastival on their campus. This resulted in the Breastival program being trademarked under Johns Hopkins Medicine. A Breastival Resource and Planning Kit was created and distributed for a nominal fee to sororities, other breast centers, nursing schools, and other cancer organizations that wanted to replicate this “learn and earn” model of educating people about breast health and breast cancer.
Just a few days after this first Breastival was held, students from other college campuses...began... inquiring how they could hold a Breastival on their campus. Over the past decade, more than 250 college sororities, breast centers, and breast cancer organizations have purchased the kit and held a Breastival in their geographic area. Many have continued to hold the event annually. These events have also been held in other countries, including Canada, New Zealand, and the United Arab Emirates. Recently, St Jude Medical Center (SJMC) in Orange County, California, conducted 2 Brestival events. On the following pages, we present a report by Danelle Johnston, RN, BSN, OCN, CBCN, detailing the SJMC Breastival experience. g
JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP
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Breast Health Education and Cancer Awareness: A Community Hospital Embracing a Novel Approach By Danelle Johnston, RN, BSN, OCN, CBCN St Jude Medical Center, Fullerton, California
xcluding skin cancer, breast cancer is the most common cancer among women and is the second-leading cause of cancer death in women.1-3 In 2011, the American Cancer Society estimated there would be 230,480 new cases of invasive breast cancer.1 Orange County (OC) California is the third most populous county in California and has a slightly higher incidence of breast cancer than the state average.2 It is projected that by 2020, the adult female population in OC will increase by 25% from 974,643 to over 1.2 million, and this increase is reported to be mostly in women aged 55 years and older.4 Women have a 98% 5-year survival rate when cancer is localized to the breast.5,6 Evidence shows that early-stage diagnosis and intervention are directly related to decreased mortality rates for breast cancer.5,6 Nevertheless, studies have indicated that many women are not establishing routine screening schedules, are initiating screening at a later age than recommended, or are delaying follow-up after positive screening findings.6 These practices result in women being diagnosed at a more advanced stage. Further decline in mortality rates, however, can be made with improvement in routine use of mammography screening and the provision of timely access to quality care.6 Table 1 summarizes the percentages of women age 40 and over in the United States, in California, and in OC who have had a mammogram within the past 2 years. The national reported rates demonstrate a decline in mammography since 2000.3 Yet, for California and OC, data show an increase in compliance.7 However, OC reports a decline in compliance in the subset of women in the 40- to 49-year-old age group. Also, the California Health Interview Survey for OC reported in 2009 that only 71.6% of physicians examined breasts for breast lumps within the past 12 months and only 83% of physicians recommended a mammogram.7 According to a study by the Robert Wood Johnson Foundation (2007), nearly 4000 lives could be saved yearly if mammography and clinical breast exam biannual screening rates could be increased to 90%.8
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Anticipating that OC will have an increase in the aging population, it is evident that the message of breast health awareness and screening needs to be conveyed to the community. Barriers to women having mammography screening and clinical breast exams have been identified. These barriers include lack of knowledge about cancer and cancer screening, deficiency in physician referral, low motivation, fear, transportation problems, lack of health insurance, and forgetfulness.9 Identifying interventions to address the barriers is imperative in order to increase compliance in breast cancer screening. Dr Harold Freeman established the first patient navigation program in 1990 to assist the medically underserved and uninsured by providing timely access to screening and treatment.10 Programs like Dr Freemanâ€™s that emphasize screening and outreach have demonstrated significant and measurable successes.10 The Oncology Nursing Societyâ€™s position statement for oncology navigation identifies that navigators must have education on and demonstrate knowledge about community assessment, resolution of system barriers, and cancer health disparities.11 The oncology nurse navigator has a unique opportunity to take the lead to ensure that communities have access to cancer screening and receive timely access to care. The navigator is an advocate within the healthcare system to facilitate community outreach and education. The American College of Surgeons Commission on Cancer has established standards that focus on community outreach (Standard 1.8) and patient navigation (Standard 3.1).12 These standards require a hospital seeking accreditation to demonstrate that community needs have been assessed and health disparities identified. Community outreach programs need to be designed to address the needs and barriers. Patient navigators participate in identifying barriers and facilitating timely access to care across the care continuum. St Jude Medical Center (SJMC) in OC began an innovative nurse navigator program in the spring of 2007. The oncology nurse navigator
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Table 1 Mammography Screening Within the Past 2 Years United States (2010)3
Orange County, CA (2009)7
Age 65 and older
leads the multidisciplinary team in program development and process improvement initiatives to assure sustainable and measurable program growth using current evidence-based practices. As part of this process, the oncology navigator acts as a resource to promote cancer awareness through community events and educational activities. The American Cancer Society states, “Further reductions in breast cancer death rates are possible by improving regular use of mammography screening and providing timely access to highquality follow-up and treatment.”6 Therefore, SJMC clearly has an opportunity to make a positive impact in the north OC communities by implementing an intervention to directly influence patient outcomes and decrease barriers to care. This can be accomplished by improving community breast health practices, increasing screening mammography, and increasing breast awareness practices, thereby diagnosing breast cancer earlier.
PLANNING AND IMPLEMENTATION Lillie Shockney, RN, BS, MAS, discussed the BreastivalTM community outreach program at the First Annual Navigation & Survivorship Conference held in Baltimore, Maryland, September 17-19, 2010.13 The BreastivalTM event is an opportunity to creatively facilitate community outreach and education on breast health and awareness developed by Ms Shockney and the Johns Hopkins Breast Center and supported by the Johns Hopkins University sorority of alpha Kappa Delta Phi. The university hosted its first BreastivalTM event in 2001 and reported outcomes that included the number of attendees, the number of participants for group activities, and the number of attendees who reported learning the correct technique for breast self-exam on a breast model.13 A BreastivalTM Resource and Planning Kit is available to groups interested in replicating the trademarked event.14 The goal of the Breastival is to provide an enjoyable and nonthreatening atmosphere where
the community can learn about breast health/ awareness and breast cancer. The event allows for local breast cancer organizations to partner and share the resources and support available in the community. Additionally, the event offers several different opportunities and activities for interacting with healthcare professionals and community organizations. The activities include opportunities to address breast health questions, interact with breast cancer community organizations, play games, and attend educational mini-seminars. Measurable program outcomes can be obtained to assess the impact of the event in the community.
Further reductions in breast cancer death rates are possible by improving regular use of mammography screening and providing timely access to high-quality follow-up and treatment. The Breastival outreach program aligns with the goals of the California Dialogue on Cancer (CDOC), the American Cancer Society (ACS), the Orange County Affiliate of Susan G. Komen for the Cure, and SJMC. All these organizations place importance on and invest their resources in building relationships with community-based breast programs and hospitals in order to wage the war against breast cancer. One of the CDOC’s goals is to increase the number of women having both a clinical breast exam and mammogram by 7.5% by 2015.15 The researchers at ACS stated that it will take a coordinated effort to increase cancer awareness and move forward in preventing cancer.16 Komen literature states that efforts need to be placed on partnerships within the community to develop a comprehensive plan for outreach and education.2 The mission at SJMC is “to extend the healing ministry of Jesus in the tradition of the Sisters of St. Joseph of Orange by continually improving
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the health and quality of life of people in the communities we serve.”17 The hospital’s strategic goals include developing and implementing disease-specific programs to enhance presence through “perfect care,” having the “healthiest communities,” and creating “sacred encounters.” Offering community health education and awareness complements the mission of our institution by striving to achieve healthy communities.
Breaking the responsibilities and details into smaller committees that reported back to the Breastival Committee made the work more manageable and time efficient. The outreach program was presented to the Breast Workgroup at SJMC in January 2011 in order to gain their support to move forward with the implementation of this innovative program. The Breast Workgroup is an interdisciplinary breast care team that develops and sets program goals, reviews and discusses clinical practice with current evidence, and reviews quality indicators and outcomes under the supervision of the Cancer Committee. The team consists of the medical director of oncology services, the comedical directors for the St Jude Kathryn T. McCarty Breast Center, director of the SJMC Breast Center, director of oncology services, nurse navigators, clinical nurse specialist, physicians, and other interdisciplinary team members. The role of the navigator was to champion this event and build excitement and momentum to achieve approval. The committee gave its full support to implementing the community outreach program. Strategies were designed to establish an organized process for successful execution. The Breastival Committee was formed to plan the outreach event. The committee members included the director of imaging, director of oncology services, manager of the breast center, breast nurse navigator, lead technologist, manager of the inpatient oncology unit, marketing representative, radiologist, SJMC executive chef, and the corporate sponsor. The radiologist was the physician chair and the navigator was the committee chair. The committee reviewed the event tool kit.
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It was decided to host 2 events: 1 for the SJMC staff and 1 for an SJMC community. The committee decided to tie in the employee health campaign called “Choose Well.” The focus of this campaign is to help employees improve individual health outcomes and develop healthier lifestyles. Offering this event at the workplace gives employees easy access to cancer screening and breast health education and serves to increase awareness and support. It was decided to hold the SJMC employee event on the hospital campus October 13, 2011, because October is Breast Cancer Awareness Month. The Oncology Services Department had previously partnered with Harley-Davidson® Anaheim-Fullerton in community outreach programs. The general manager of Harley-Davidson enthusiastically agreed to participate in Breastival by donating space at their facility in Fullerton, which has a large outdoor venue, and providing volunteers, entertainment, and additional resources. Because Harley-Davidson already had an annual event scheduled in October, the Breastival event was scheduled for November 20, 2011. The project was divided into 6 sections and assigned to subcommittees: (1) food and venue, led by the SJMC executive chef, (2) sponsors, led by director of oncology services, (3) community organizations, led by breast nurse navigator, (4) games and educational seminars, led by manager of the SJMC Breast Center, (5) volunteers, led by lead technologist of SJMC Breast Center, and (6) marketing, with co-leaders the director of imaging and Breast Center nurse navigator. Breaking the responsibilities and details into smaller committees that reported back to the Breastival Committee made the work more manageable and time efficient. The subcommittees met as needed, and the Breastival Committee met monthly. The committee chair communicated frequently with the group via e-mail to keep the team updated on the subcommittees’ progress. The Breastival tool kit describes very detailed processes on how to host the event. Also, Ms Shockney made herself available to answer any questions and give guidance. Once the venues and dates were secured, we needed to establish partnerships with community breast cancer organizations to sponsor the events. The following organizations played a vital role in the event: Orange County Breast Cancer Coalition, ACS,
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Susan G. Komen for the Cure, Healing Odyssey, St Jude Kathryn T. McCarty Breast Center, Virginia K. Crosson Cancer Center, St Jude Expressions Appearance Center, and Synergy St Jude Fitness Center. Each of these organizations had community resources, educational materials, and information to offer. Marketing strategy and development of a design that would be recognizable for the 2 events were components in the planning process. The committee established a collaborative relationship with the hospital marketing department. Print media were developed that included the event logo, flyers, both internal and external advertisements, as well as event materials such as educational message boards, passports, and evaluations. During the 9 months prior to the events, the subcommittees worked diligently to secure sponsors for food and raffle prizes. The educational content was identified, and games that were fun and interactive were created to emphasize key points. An “Ask the Doc” segment was built into the event to offer an opportunity for the attendees to ask the breast care physician team questions about breast health and breast cancer. Speakers were secured for the educational mini-seminars and topics were selected offering a cross section of breast health and self-care topics. The educational mini-seminars were on yoga, “Taking Care of Mind, Body, and Spirit”; mammography, “To Squish or Not to Squish”; proper bra fitting, “Does Your Cup Runneth Over?”; nutrition, “ABCs of a Healthy Diet”; self-care, “Keeping Humpty Dumpty on the Wall—Hang in There Baby”; and breast self-exam, “The Breast Macarena.” There was also a booth with men’s health and cancer prevention information that was made available to attendees. Women had an opportunity to make a “pinky promise” stating they would have an annual clinical breast exam and mammogram and were given an opportunity to schedule a mammogram. If a woman did schedule a mammogram, she was given a pink ring. At each of the events, food and entertainment were supplied by our sponsors. Booths allocated to the 8 participating community organizations were arranged around the perimeter of the space. Each organization showcased the services offered to the community. Educational posters featuring breast cancer statis-
tics and health facts were created and placed throughout the space to capture participants’ attention. The space was designed so it was easy to navigate, allowing for participation in all event activities. Table 2 outlines the BreastivalTM event activities. The attendees were given a passport that outlined the event and gave instructions on how to find their way through the experience; on the reverse side was the event evaluation. As the attendees visited each of the 8 booths, they were asked a breast health question, and if they answered correctly, were given a stamp on the passport. If the attendees visited all 8 booths and answered the questions correctly (as evidenced by completing their passport), they had an opportunity to submit their passport for a “booby prize.” Prior to submitting the passport, the attendee was asked to complete the evaluation on the back for feedback. Optionally, participants attended an educational mini-seminar, participated in games, and could schedule a mammogram. They then signed a banner that stated “BREASTIVALTM Celebrating Breast Cancer Awareness 2011.” After the events, the banners were hung outside on buildings at each of the venues, displaying the many signatures and special messages to the community.
Speakers were secured for the educational mini-seminars and topics were selected offering a cross section of breast health and self-care topics. RESULTS The outcomes of both Breastival events are outlined in Table 3. Each of the events was seen by the committee as a success. The SJMC staff members expressed that the event was educational and fun. A measurement of success was the number of attendees reporting new knowledge gained on the event evaluation. In addition, 42 mammograms were scheduled. Several women had not had a mammogram for 6 to 10 years, and further outcome studies must be done to assess whether these women will follow up and actually have the imaging completed as scheduled. Periodically throughout the day there were “Ask the Doc” seg-
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Table 2 Breastival Event Activities Component
The attendee will demonstrate knowledge of breast health and breast cancer by completing the event passport.
The attendee is given a passport with instructions on how to navigate the Breastival activities. The attendee must visit each booth to learn of resources, answer questions, and have the passport stamped. Completed passports are entered to win a “booby prize.” An evaluation form is on the back of the passport.
Game: Match the Rack
The attendee will match the appropriate size bean bags to the appropriate size bra.
The game has 3 different size bras and 3 different size bean bags. The purpose of this game is to identify that women’s breasts come in different shapes and sizes. There were a lot of laughs at this station.
Game: One Lump or Two
The attendee will feel for and identify beans in a bucket of rice.
The attendee is blindfolded and places a hand in a bucket of rice representing breast tissue. The object is to locate the beans in the rice, which symbolize lumps in the breast. This is harder than it sounds. Attendees learn about the anatomy of the breast and the importance of becoming familiar with their breast in order that they might be able to detect a change. Attendees learn about breast signs and symptoms to report to their physicians.
The attendee will be able to identify the anatomy of the breast and state the signs and symptoms to report to her physician.
Game: Booby Trapper
The attendee will identify where the breast model is hidden. The attendee will demonstrate how to do a breast self-exam.
The game has 3 drinking cups that are placed facing down on a table. A small breast model is placed underneath one of the cups, then the cups are shuffled. The attendee identifies which cup the breast model is under. After the game is completed, the attendee has an opportunity to palpate a breast model and learn how to do a breast self-exam.
The attendee will state the importance of participating in breast health and self-care activities such as annual mammography, breast self-exam, exercise, and maintaining proper nutrition.
The attendee has an opportunity to attend 1 or more of the following seminars: • To Squish or Not to Squish • ABCs of a Healthy Diet • Keeping Humpty Dumpty on the Wall—Hang in There Baby • Does Your Cup Runneth Over? • Taking Care of Mind, Body, and Spirit The educational seminars were offered every hour during the event.
The attendee will demonstrate the Breast Macarena.
Our Clinical Nurse Specialist, Kathy Pearson, RN, CNS, AOCN, created an innovative approach to teaching visual inspection of the breast by modifying the Macarena. This was a great way to engage the whole room in a fun activity, while educating the attendees at the same time. Lots of laughs and giggles.
The attendee will be able to demonstrate how to do visual inspection of the breast.
DJ and Live Band
The attendee listens to music while participating in the event activities.
At the SJMC event, a DJ emceed and played music during the event. At the Harley-Davidson venue, a band named “Carisma” donated their services and played music during the event. The music added to the atmosphere and further engaged the attendees.
The event provides food for the attendees as a way to entice the attendees to participate.
Several sponsors donated food for the 2 events.
The banner signing demonstrates that attendees acknowledge the importance of breast cancer awareness.
The banner signing was an activity for the attendees to participate in to acknowledge the importance of breast cancer awareness. Each banner was signed by attendees and hung at each prospective site.
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( Table 2 Breastival Event Activities (Continued) Component Mammogram Scheduling
Objective The attendee will schedule her yearly mammogram. The attendee will be able to state the importance of yearly mammography screening.
“Ask the Doc”
The healthcare professional identifies questions that community members have regarding breast health and breast cancer.
ments during which the physicians/nurse practitioners would answer written questions addressing common concerns about breast health and breast cancer treatment. This was cumbersome and interfered with the event flow and activities. It was decided by the committee to continue to incorporate the concept at the second event but to have an “Ask the Healthcare Professional” booth that would be manned for 15 minutes on the hour throughout the event. Unfortunately, due to rain this activity was canceled. The community event at Harley-Davidson in Anaheim-Fullerton was well attended in spite of torrential rain. Over 300 attended, and half of the attendees completed the passport. Unfortunately, the rain and wind would not let up and the event was closed 2 hours prior to the scheduled time. Regardless of the weather, people commented that they enjoyed learning about breast health, eating barbeque, and listening to a live band. The 20 members of the Positively Pink Club from Fullerton High School, which raises breast cancer awareness and education at the high school level, participated in the event. There was high traffic at the mammogram scheduling booth, but due to the attendees having various medical homes, many needed to be referred to different facilities. St Jude Breast Center did schedule 2 mammograms. For future events, it will be imperative to identify community members who have different medical homes and identify ways in which their needs can be addressed. The event message was received, as evidenced by women inquiring about scheduling a mammogram and acknowledging the value of early detection. There were several opportunities during which services to the under-
Description The St Jude Kathryn T. McCarty Breast Center arranged for 2 computers to be set up that had access to the mammography schedule. Staff were available to schedule women for their mammogram at the breast center. This was 1 initiative put in place to reduce barriers to care. Women were given a pink ring if they scheduled a mammogram. The SJMC breast cancer team was asked to participate in the “Ask the Doc” segments. The healthcare professional answered common questions about breast health and breast cancer. At the SJMC employee event, there was a schedule designed to have a healthcare professional address the attendees every hour for 5 minutes.
insured and underserved populations were offered by community organizations. These women were networked into programs for cancer screening and supportive care, which was one of the outcome goals for the event. Harley-Davidson asked SJMC to partner together for next year and host another Breastival event.
These women were networked into programs for cancer screening and supportive care, which was one of the outcome goals for the event. Additional outcome surveys from both events asked the attendees to rank their favorite parts of the event. The outcomes were as follows: (1) opportunity to ask experts and healthcare professionals questions; (2) presentations on breast health and cancer prevention; (3) convenience— easy to visit all booths and presentations; (4) games and raffles; and (5) food and entertainment. Attendees suggested that the event could be improved by extending hours, offering more men’s health information, incorporating survivor stories, having more booths, providing Spanish-language materials, and having better weather. The attendees felt that the events were well organized, fun, interactive, and informative.
DISCUSSION The Task Force on Community Preventive Services has made some evidence-based recommendations on interventions to increase breast,
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Table 3 St Jude Medical Center Breastival Event Outcomes St Jude Medical Center Employee Event
Community Event at Harley-Davidson in Anaheim-Fullerton Note: The event had to close down 2 hours prior to scheduled time due to heavy rain.
Number of attendees
N = 497* *This represents 41% of the employees working the day of the event.
88% women 12% men Attendance at the educational mini-seminars
N = 141 28% of attendees participated
N = 315 69% women 31% men
N = 35 11% of attendees participated Note: Due to rain, the seminars were canceled after hosting 2 sessions.
Number of mammograms scheduled
N = 408 82% completed a passport
N = 173 55% completed a passport
Number of attendees who completed an evaluation
N = 338 68% completed an evaluation
N = 110 35% completed an evaluation
Number of attendees who had never attended a breast health educational event
N = 284 84%
N = 69 63%
38% responded no 61% responded yes 1% did not respond
32% responded no 68% responded yes
1. Risk Factors for Breast Cancer 2. Men and Breast Cancer 3. Genetics 4. Breast Cancer Statistics 5. Breast Self-Exam
1. Community Resources and Programs 2. Men and Breast Cancer 3. Genetics 4. Breast Cancer Statistics 5. Breast Cancer Screening
Would the attendee attend another Breastival event?
2% responded no 95% responded yes 3% did not respond
1% responded no 99% responded yes
Was the attendee previously performing breast self-exams monthly?
40% responded no 51% responded yes 9% did not respond
28% responded no 36% responded yes 33% did not respond
If not performing breast self-exam monthly, will attendee begin doing them now?
3% responded no 97% responded yes
6% responded no 94% responded yes
Number of passports completed
Was there something specific the attendee learned? Top 5 responses about what attendees learned
cervical, and colorectal screening.18 These recommendations include the use of small media such as printed materials, one-on-one education, increasing community access, and reducing barriers, which are the methods used in the Breastival. The structure of the event allowed for many different opportunities to interact and learn, made resources available, and facilitated access to screening by reducing the barriers. The words “boob” and “booby” have been used in design and implementation of the Breastival event. This may be offensive to some when referencing the breast. The terms were used to facili-
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tate communicating the breast health awareness message in a fun and nonthreatening manner. The terminology is also consistent with that used in the Breastival tool kit. In hosting both a hospital employee and a community event, our committee did not receive any negative feedback or comments about the words “boob” or “booby.” In fact, the terminology created a less frightening atmosphere and broke down some barriers to talking openly about breasts. Nurse navigators are in a key position to champion the message for breast cancer awareness and screening. The steps to implementation of a com-
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munity outreach program start with identifying the current compliance rates for screening mammography, physician practices for screening mammography referrals, and clinical breast exams. Next, the navigator must identify the needs of the community and barriers related to breast cancer screening and seeking early follow-up care and treatment. Finally, the navigator develops a plan for education and outreach that aligns with plans at the national, state, and local levels as well as with the hospital organization. To achieve success, it is imperative that the navigator receive administrative and physician support and buy-in. The vision for the Breastival event was to look for new and innovative ways to get the message and resources out to staff and the surrounding community. The challenge of this event was to step outside of what is comfortable and raise the bar in offering ground-breaking opportunities to meet the needs of the community for breast health awareness and screening. We believe that we met this challenge and look forward to repeating this successful project in the future. g For information on the Breastival or on how to order a Breastival™ Resource and Planning Kit please contact Lillie Shockney at shockli@ jhmi.edu. Acknowledgements: I would like to thank the Breastival Committee for all the hard work and dedication that created 2 successful events. The committee team members are: Will Gotay; Gianna Laiola, RN, BS, OCN; Tom Loveland; MaryAnn Perez; Lea Powell, RN, MSN, OCN; Paula Reese, RTM; Judy Ricci, RN, BSN; Cathy Shircliff, CTR; Phillip Unger, MD; and Bertha Vargas, ARRT, RTM, RDMS, BR. Also, a special acknowledgement to my mentor Kathy Pearson, RN, CNS, AOCN, who always challenges me to pursue clinical excellence and never stop learning.
1. Desantis C, Siegel R, Bandi P, et al. Breast cancer statistics, 2011. CA Cancer J Clin. 2011;61:409-418. 2. Orange County Affiliate of Susan G. Komen for the Cure. Community profile report 2011. http://www.komenoc.org/ atf/cf/%7B7DAE5A7D-C3F4-4C8C-BA7A-FEBDCE2559 20%7D/2011%20CPReport%20Final_6.7.2011.pdf. Accessed March 15, 2012.
3. American Cancer Society. Breast cancer facts & figures 2011-2012. American Cancer Society Web site. http://www. cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-030975.pdf. Accessed March 15, 2012. 4. Orange County Affiliate of Susan G. Komen for the Cure® & UCI Data Project. Breast cancer incidence & prevalence in Orange County. IV. Planning for breast cancer in Orange County. http://www.komenoc.org/atf/cf/%7B7dae5a7d-c3f44c8c-ba7a-febdce255920%7D/MONOGRAPH%204.PDF. Accessed March 30, 2012. 5. Henley SJ, King JB, German RR, et al. Surveillance of screening-detected cancers (colon and rectum, breast, and cervix) – United States, 2004-2006. MMWR Surveill Summ. 2010;59:1-25. 6. American Cancer Society. Cancer prevention & early detection: facts & figures 2011. American Cancer Society Web site. http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-029459.pdf. Accessed March 12, 2012. 7. Mammogram Screening History 2009. California Health Interview Survey Web site. www.chis.ucla.edu. Accessed November 18, 2011. 8. New study: boosting five preventive services would save 100,000 lives each year. Robert Wood Johnson Foundation Web site. http://www.rwjf.org/pr/product.jsp?id=21904. Published 2007. Accessed November 26, 2010. 9. Breslow RA, Rimer BK, Baron RC, et al. Introducing the community guide’s reviews of evidence on interventions to increase screening for breast, cervical, and colorectal cancers. Am J Prev Med. 2008;35(suppl 1): S14-S20. 10. Varner A, Murph P. Cancer patient navigation: where do we go from here? Oncol Issues. 2010;May/June:50-53. http://accc-cancer.org/oncology_issues/articles/mayjune10/ MJ10-VarnerMurph.pdf. Accessed March 18, 2012. 11. Oncology Nursing Society, Association of Oncology Social Work, National Association of Social Workers. Oncology Nursing Society, the Association of Oncology Social Work, and the National Association of Social Workers joint position on the role of oncology nursing and oncology social work in patient navigation. Oncol Nurs Forum. 2010;37:251-252. 12. Cancer program standards 2012: ensuring patient-centered care. American College of Surgeons Web site. http://www.facs. org/cancer/coc/programstandards2012.html. Published 2011. Accessed December 3, 2011. 13. Shockney L. Reaching your community can be more than standard educational events. J Oncol Navigation & Survivorship. 2010;1:22. http://issuu.com/aonn/docs/jons_november2010. Published November 19, 2010. Accessed March 18, 2012. 14. Johns Hopkins Breast Center. The John Hopkins BreastivalTM Resource and Planning Kit. Lillie Shockney: email@example.com. 15. California’s comprehensive cancer control plan, 20112015. California Dialogue on Cancer Web site. http:// www.cdoc-online.org/cccp.html. Updated July 2011. Accessed March 18, 2012. 16. ACS report: more collaboration needed to increase anticancer efforts. American Cancer Society Web site. http://www. cancer.org/Cancer/news/News/acs-report-more-collaborationneeded-to-increase-anti-cancer-efforts. Published May 19, 2011. Accessed November 2, 2011. 17. St Jude Medical Center mission statement. St Jude Medical Center Web site. http://stjudemedicalcenter.org/content/aboutus-0. Accessed November 2, 2011. 18. Task Force on Community Preventive Services. Recommendations for client- and provider-directed interventions to increase breast, cervical, and colorectal cancer screening. Am J Prev Med. 2008;35(suppl 1):S21-S25.
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Third Annual Navigation and S September 14-16, 2012 • Phoenix, Arizona • PRELIMINARY AGENDA* Friday, September 14 1:00 – 3:00 pm
Pre-Conference Workshops • Core Principles of Navigation • Grant Writing, Research, and Getting Published • Providing Optimal Community Outreach • Implementing a Survivorship Program/Clinic 3:15 – 5:15 pm Pre-Conference Workshops • Core Principles of Navigation • Grant Writing, Research, and Getting Published • Providing Optimal Community Outreach • Implementing a Survivorship Program/Clinic 5:15 – 7:00 pm FREE TIME 7:00 – 9:00 pm Welcome Reception/Posters in the Exhibit Hall
Saturday, September 15 7:30 – 8:30 am 8:30 – 8:45 am 8:45 – 9:45 am 10:00 – 11:30 am
Breakfast Symposium/Product Theater Welcome & Introductions Conference Co-Chairs General Session 1: Navigation Update: 2012 Disease-Site–Specific Breakouts A) Breast Cancer Navigation B) Lung Cancer Navigation C) GI Cancer Navigation D) Prostate Cancer Navigation E) Head & Neck Cancer Navigation F) Hematologic Malignancies Navigation G) Gynecologic Cancers Navigation H) Navigation Program Administration 11:45 am – 1:00 pm Lunch in the Exhibit Hall 1:15 – 2:15 pm Advocacy Keynote 2:15 – 3:15 pm General Session 2: Best Practices in Survivorship Care Planning 3:15 – 4:15 pm General Session 3: Plenary Session Moderator: Research Committee Member 4:15 – 5:00pm Poster Reception in the Exhibit Hall 5:00 – 7:00 pm FREE TIME 7:00 – 10:00 pm Awards Dinner
CONFERENCE OVERVIEW AONN’s Third Annual Conference will continue to advance the navigation profession by expanding the scope of educational sessions, networking opportunities, and poster presentations. In addition, this year’s conference will address the evolving challenges of program improvement, the role of personalized medicine, and implementing best practices in navigation, survivorship, and psychosocial care.
TARGET AUDIENCE AONN’s Third Annual Conference is the only meeting that gives you access to decision-makers and key practitioners involved in oncology navigation and survivorship. If your company provides any of the following services/products for the oncology healthcare community, this is the meeting for you. This educational initiative is directed toward oncology nurse navigators, patient navigators, and social workers. • • • • •
Pharmaceutical/Biotech Genetic Laboratory Services Navigation Software Patient Advocacy Training
• • • • •
Patient Access Reimbursement Publishers Education Certification
CONTINUING EDUCATION INFORMATION Goal AONN’s Third Annual Navigation and Survivorship Conference will advance the role of navigation and survivorship in cancer care to ultimately improve the quality of patient care. Objectives • Discuss the evolution of the role of navigation in healthcare • Assess strategies for navigating diverse patient populations by cancer type and environmental factors • Define methods for providing patient support and guidance in the age of personalized cancer care • Evaluate best practices regarding survivorship and psychosocial care
CALL FOR ABSTRACTS
Sunday, September 16 7:30 – 8:30 am Breakfast Symposium/Product Theater 8:30 – 9:30 am General Session 4: Navigation in the Age of Personalized Cancer Care 9:30 – 10:30 am General Session 5: Best Practices in Psychosocial Care 10:45 am – 12:15 pm Practice-Setting–Specific Breakouts • Urban • Suburban • Rural 12:15 – 1:15 pm Lunch in the Exhibit Hall 1:30 – 2:30 pm Survivor Keynote 2:30 – 2:45 pm Conclusion of the Conference
This is an opportunity to share research, programs, and results with your colleagues. Submit your abstract via e-mail to Liz@aonnonline.org. Abstract Deadline: August 1, 2012
SPONSORS This activity is jointly sponsored by AONN Foundation for Learning, Inc., and Medical Learning Institute, Inc.
*Preliminary agenda, subject to change.
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Survivorship Conference â€˘
Arizona Grand REGISTERED NURSE DESIGNATION Medical Learning Institute, Inc. Provider approved by the California Board of Registered Nursing, Provider Number 15106, for up to 12.25 contact hours.
SOCIAL WORK DESIGNATION This activity is pending approval from the National Association of Social Workers. Contact hours for this continuing social worker education activity have been submitted to the National Association of Social Workers.
CONFERENCE REGISTRATION Register online: www.regonline.com/aonn2012
Current Members New Members Nonmembers
$295 $345 $425*
*Register by July 15 and save $100 off full registration of $525.
CONFERENCE CO-CHAIRS Sharon Gentry, RN, MSN, AOCN, CBCN Breast Health Navigator Derrick L. Davis Forsyth Regional Cancer Center Winston-Salem, NC Lillie Shockney, RN, BS, MAS University Distinguished Service Associate Professor of Breast Cancer Depts of Surgery and Oncology Administrative Director, Johns Hopkins Breast Clinical Programs Administrative Director, Johns Hopkins Cancer Survivorship Programs Associate Professor, JHU School of Medicine, Depts of Surgery & Gynecology and Obstetrics Associate Professor, JHU School of Nursing Baltimore, MD
INVITED FACULTY* Juli Aistars, RN, APN Prostate Nurse Navigator Northwest Community Hospital Arlington Heights, IL
Kristin Holmberg, MN, RN Lung Cancer Nurse Navigator Overlake Hospital Medical Center Bellevue, WA
Robin Atkinson, RN, BSN, OCN GYN Nurse Navigator Forsyth Medical Center Winston-Salem, NC
Kimberly F. Leake, RN, MSN Nurse Navigator Hematologic Malignancies Program University of Virginia Health System Hematologic Malignancies Program and Cancer Center Charlottesville, VA
Karyl Blaseg, RN, MSN, OCN Manager of Cancer Programs Billings Clinic Cancer Center Billings, MT Linda Fleisher, PhD, MPH Assistant Vice President, Health Communications and Health Disparities Fox Chase Cancer Center Cheltenham, PA
Coralyn Martinez, MSN, RN, OCN GI Nurse Navigator The Lacks Cancer Center Saint Maryâ€™s Health Care Grand Rapids, MI
Pamela Matten, RN, BSN, OCN Nurse Navigator Thoracic Oncology Program The Center for Cancer Prevention and Treatment St. Joseph Hospital Orange, CA Nicole Messier, BSN, RN Upper GI and GU Nurse Navigator/ Clinical Program Coordinator Vermont Cancer Center Fletcher Allen Health Care Burlington, VT Roxanne Parker, MSN Clinical Nurse Navigator Arizona Oncology Associates Phoenix, AZ Mandi Pratt Chapman, MA Associate Director GW Cancer Institute Community Programs Co-Director, GWCI Center for the Advancement of Cancer Survivorship, Navigation and Policy Project Director, National Cancer Survivorship Resource Center Washington, DC Elaine Sein, RN, BSN, OCN, CBCN Senior Project Manager, Fox Chase Cancer Center Fox Chase Cancer Center Partners Rockledge, PA
Jean B. Sellers, RN, MSN, OCN Administrative Clinical Director UNC Cancer Outreach Chapel Hill, NC Julie Silver, MD Assistant Professor Department of Physical Medicine and Rehabilitation Harvard Medical School Boston, MA Jay R. Swanson, RN, BSN, OCN Oncology Nurse Navigator Saint Elizabeth Cancer Institute Lincoln, NE Pamela Vlahakis, RN, CEN, CRN, CBCN Nurse Coordinator Hunterdon Regional Breast Care Program Hunterdon Regional Cancer Center Flemington, NJ Cindy Waddington, RN, MSN, AOCN Clinical Nurse Specialist Cancer Care Management Certified Health and Wellness Coach Mind, Body and Spirit Wellness Program Helen F. Graham Cancer Center Christiana Care Health System Newark, DE
*Subject to change
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MUJER A MUJER/WOMAN TO WOMAN: Using a unique venue for culturally appropriate outreach and navigation in an underserved area to increase screening By Sally Cascella, MAHSN, BSN, RN, CNOR Norma F. Pfriem Breast Care Center, Bridgeport Hospital, Bridgeport, Connecticut
Jacqueline Keren, MFA, BA Norma F. Pfriem Breast Care Center, Bridgeport Hospital, Bridgeport, Connecticut
Jacqueline Keren, MFA, BA
he Norma F. Pfriem Breast Care Center (NPBCC) is a comprehensive breast care center, providing screening, diagnosis, treatment, outreach, and supportive services. The center serves Connecticut’s southern Fairfield County, including the low-income community of Bridgeport, a city of more than 139,000 residents, with over 21% living in poverty. Bridgeport is almost 70% minority, split nearly evenly between Hispanics (33.5%) and African Americans (34.8%).1 About 43% of residents speak a language other than English at home.1 Connecticut has the second highest rate of new breast cancer cases in the nation and the twelfth highest death rate in the nation (with higher death rates for African American women).2 Nearly one-third of breast cancers in Connecticut are detected at later stages, after some metastasis has occurred.2 Within the NPBCC’s service areas, the statistics are even more troubling. The city of Bridgeport is characterized by high stage IV breast cancer diagnoses, high breast cancer incidence, and above-average breast cancer mortality.3 In addition, Bridgeport has one of the highest risks for death from breast cancer in the state (30.1 per 100,000, well above the state average of 23.9).4 For the last 10 years, the Breast Care Center’s community-based outreach program has helped low-income and medically underserved women understand the importance of screening to detect breast cancer at an early stage. The program has also taught women how to access free mammograms and other screening and diagnostic procedures (at the NPBCC and elsewhere) and where to
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find support and counseling services in their local community. The NPBCC provides the largest outreach program of its kind in the area, reaching over 2500 women each year. Nurse educators participate in programs at churches, places of employment, community centers and agencies, clinics, health fairs and other neighborhood fairs, community colleges, and senior housing.
A COMMUNITY AT RISK Several risk factors converge in Bridgeport to create a community at increased risk of breast cancer. Lack of adequate health insurance is common. In Connecticut, Hispanics are 5.4 times more likely—and blacks 2.7 times more likely— than whites not to have health insurance.5 This leaves 40% of Connecticut’s Hispanic community uninsured.6 The uninsured and Medicaid recipients are more likely to be diagnosed with cancer at a later stage compared to those with health insurance.2 People from lower social classes are also less likely to receive cancer screenings, and their survival rates are lower, even when they have healthcare coverage.2 Health disparities also play a part. African American women across all age groups are more likely to die from breast cancer.7 This disparity, now at 37%, continues to grow, according to a recent report from the American Cancer Society. With the African American population at over 30%, the impact in Bridgeport is enormous. Finally is the question of sheer numbers. The Latino population is growing in Bridgeport as it is across the nation, where it is expected to triple by 2050. With that growth will come a rise in the
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Identify outreach sites; develop talking points for lay outreach workers
Nurse educator and survivors attend outreach programs and schedule women for appointments ➤
Develop and distribute recruitment flyers to patients and volunteers via e-blasts, newsletters, and MD offices
Patient outreach coordinator tracks women referred through outreach program, sends reminders, and notifies nurse educator of no-shows
Vet survivors; train in one-on-one sessions
Nurse educator schedules survivors to make follow-up calls: appointment reminders, rescheduling no-shows
Establish relationships with MDs for making appointments available to outreach program; develop tracking database ➤
Outreach and Follow-up
CHANGING TACTICS While the NPBCC has been successful in reaching many underserved women through its outreach program, over the years it became clear there were some women—the very poorest, without English, distrustful of the healthcare system—who wouldn’t come to a health fair or other outreach program or follow up on a referral form, even under the best of circumstances. We saw a need to reach more deeply and aggressively into the community. This paper will describe how we developed a new outreach program to connect with our most isolated clients using evidence-based outreach methods in a unique venue. Mujer a Mujer/ Woman to Woman trains bilingual cancer survivors as volunteer lay outreach workers to navigate women into screening. After the initial success of the bilingual outreach effort, the program became a regular fixture at a weekly food pantry to reach women in a medically underserved neighborhood. This paper will outline the process for setting up and executing the program (Figure 1) and establishing a presence at a unique venue to target the neediest. Initial results and program benefits will also be discussed, as well as lessons learned and plans for enhancing and expanding the program.
Program Setup ➤
number of Latinas with breast cancer, according to Lydia Buki, PhD, a professor of community health at the University of Illinois, who has studied incidence and mortality rates for breast and other cancers among Latinas.8 Breast cancer, she notes, is the most common cancer afflicting Latinas in the United States, and the 5-year survivorship rate for Latinas is lower than for nonLatina whites.8 Latinos are more likely than nonLatino whites to present with larger tumors or at more advanced stages of disease.8 Further, researchers from the Arizona Cancer Center and MD Anderson Cancer Center have found that breast cancer appears to be occurring at an earlier age among Hispanics, something we have observed at the NPBCC.9 Raising awareness is critical to serving this growing community and detecting breast cancer early, when it is more treatable. “[The issue] is women knowing the importance [of cancer screening], and at the same time being able to access information and screening services,” according to Dr Buki.8
Develop and distribute promotional materials to internal and external media outlets
Figure 1: Flowchart: Setting up and executing a new outreach program, Mujer a Mujer/Woman to Woman.
MUJER A MUJER/WOMAN TO WOMAN In 2009, with a grant from the Avon Breast Care Foundation, the Breast Care Center began a new program, Mujer a Mujer/Woman to Woman. As part of the program, volunteer bilingual breast cancer survivors accompanied nurse educators at outreach programs. There was evidence to support making this change. Studies indicate that peer role models are effective in helping Latinas navigate the healthcare system to obtain exams.8,10 They are trusted sources of information, speak the same language, and know the culture. By discussing cancer, a topic not normally broached in traditional Latino culture, role models help to break down barriers to screening. We scheduled community workshops at existing venues while adding other more creative settings, such as job training programs, parent
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The Norma F. Pfriem Breast Care Center’s Senior Nurse Navigator-Educator Sally Cascella (center) worked with Deacon Donald Foust (left), the administrator of Holy Rosary Church, to implement the outreach program.
groups, and outreach programs for the homeless, to create a multisite program tailored to the community, an approach that has been shown to increase participation in screening among Latinas.11 Initially, we identified breast cancer survivors from our existing pool of patients and volunteers and recruited some of them to join our nurse educators at our outreach programs. Later, we created a flyer, in English and Spanish, to distribute to patients (in person and via e-mail) for recruitment purposes. Volunteers were offered a $50/day stipend plus $15/day for transportation. While the response was good, many respondents were not bilingual, lacked flexible schedules, or were looking for regular employment. In the end, we built our pool slowly, contacting women among our volunteers and patients who appeared to have the skills and flexibility to succeed as lay outreach workers. The nurse educator wrote talking points, trained survivors individually as outreach workers, and attended outreach programs with sur-
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vivors. To the public, there was no apparent difference between the professional and lay outreach worker, but the nurse could observe and listen and step in as necessary. Eventually survivors were able to attend outreach programs on their own. The nurse secured a list of available appointment times from doctors at our clinic and used it to schedule women who expressed an interest. Later, the nurse negotiated the ability to call into the office for more time slots. Teaching materials included breast self-exam shower cards and patient education sheets. We created a program database to track clients and English/Spanish referral forms to distribute at events. The forms were coded by venue, so we could track referrals from the program events. The foundation required us to track demographic information as well, using an anonymous client intake form (CIF). We promoted the program through our newsletter, patient e-mail list, ads in local newspapers—including Spanish-language papers—press releases, and
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2nd quarter 3rd quarter 4th quarter
100 80 Percent Increase
Web-based community calendars maintained by local media outlets, which resulted in several radio interviews during the morning news shows about the outreach program and breast health in general. It quickly became clear that while the number of women we referred for appointments was increasing, only a small percentage were following up on their own. To increase participation, we began scheduling appointments while we engaged women in conversation at our outreach events rather than giving them the option of calling us. Staff began taking appointments with them, and this made a significant difference. Women were also offered a $15 cash card to a local grocery store if they scheduled an appointment, and we developed a contact sheet to accompany the CIFs so we could follow up with the women. Later, we gained the ability to call in for alternate appointment dates and times for women who couldn’t make available slots. Scheduled and completed appointments increased each quarter—mammograms increased by 36% and clinical breast exams by 37% from the second to the third quarter, and by 34% and 59%, respectively, from the third to the fourth quarter (Figure 2). The no-show rate remained high and needed to be addressed. It had become clear that many women were scheduling appointments simply to get the grocery store cash card but were not following through. We changed our process; clients would receive a grocery store card only if they came in for their appointment. With many women below the poverty level, the cards proved to be a powerful incentive, much more so than other items we had tried in the past such as free cosmetics and jewelry, and use of the cards resulted in increased compliance. We also shifted follow-up to our volunteer breast cancer survivors because of their language skills. Survivors called women before their appointments and followed up if they didn’t show. Although transportation within our urban location, including the availability of free rides through Medicaid, did not appear to be a factor preventing women from keeping their appointments, keeping in touch was often challenging. Because of their financial situations, our low-income clients move often. Many do not have phone service or lose phone service when their finances change. However, with the combination of our increased calling
60 40 20 0
Clinical Breast Exams
Figure 2: Results of screening recruitment.
and the grocery store cards as incentives, many more women were completing their appointments. By the fourth quarter, our no-show rate had decreased by 23%. Despite challenges in the beginning, by the end of the year we had developed an outreach program that navigated women into screening at the annual rate we had set for ourselves of 150.
FINDING THE NEEDIEST Targeting the neediest for early detection required us to be creative. One neighborhood with a high incidence of late-stage diagnosis called out for our attention. The central/east area of Bridgeport is a low-income, medically underserved area designated as a primary care health professional shortage area.12 The population is primarily Hispanic. As in other areas of Bridgeport, women have difficulty navigating the healthcare system because of language and cultural barriers. As a result, many have not seen a doctor in years, nor are they likely to venture outside the neighborhood for healthcare. Many are without insurance because of a lack of awareness or misconceptions about public insurance. These were women with the greatest need, yet they were the least likely to come to an outreach program. And no outreach workers had gone to them. A UNIQUE VENUE With the help of a local church, the Holy Rosary Church in Bridgeport, we set up shop at their food pantry, believing we had a better chance of reaching women where they lived and at institu-
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had never had a mammogram, met with a nurse educator and a bilingual breast cancer survivor and signed up for a free mammogram. She was seen at the Breast Care Center’s clinic at Bridgeport Hospital and later learned she had been diagnosed with breast cancer. Now she is receiving treatment through the Breast Care Center without having to worry about medical bills or insurance. For this woman, the grocery store cards were a very meaningful incentive and key to getting her to complete her first and subsequent appointments. Although maintaining contact has been challenging, we continue to work with her through her treatment.
Survivor-educator Alicia Berry (left) schedules a clinical breast exam during the breast health outreach program at the Holy Rosary Church food pantry.
tions they were sure to frequent. About 70 women from our target population came to the food pantry each week, including some who were homeless. Deacon Donald Foust, the church administrator, was an enthusiastic supporter. He explained, “By providing access to these important services, I believe we have the potential to save lives in a population that is in dire need of pre-ventive care.”
RESULTS The program took place monthly, and we spoke to 35 women at our first event. After that, outreach workers spoke with 30 to 40 women each month. Women were scheduled for and completed appointments at a rate similar to our other outreach programs. About 30% were scheduled for mammograms, for many their first, and about 25% completed their appointments. Women with abnormal results received advanced diagnostic services. Women were tracked and followed at the Breast Care Center. We also helped women without regular healthcare connect with a doctor. Patients met with a financial advocate who helped them access their benefits, including the Connecticut Breast and Cervical Cancer Early Detection Program and Medicaid. Spanish speakers were referred to a bilingual social worker. The program has already saved lives. One 47year-old woman, homeless and mentally ill, who
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BRIDGING BARRIERS Women overall were receptive to the breast cancer survivors as outreach workers. They were more likely to talk about breast health and share experiences with someone who had been through the breast cancer experience and who spoke their language, an important factor for many women we encountered. Many of their anxieties were lessened when they met these survivors and understood that breast cancer could be overcome. Alicia, one of the bilingual breast cancer survivors who accompanied our outreach workers, reported that many of the women she encountered were surprised to find someone who could speak with them in Spanish. She also reported that many women had no idea when or how to examine themselves for breast cancer. Alicia was very open with women about her breast cancer journey. When they learned that her cancer was found during a routine mammogram, they understood the importance of an annual mammogram. It gave them hope when they met a survivor who was doing well and had returned to her life as it was before breast cancer. Survivors and clients also bonded as women. At the East Side Senior Center in Bridgeport, Alicia met a 50-year-old woman who had not had a mammogram in 2 years. Alicia shared her story, and the conversation shifted to how, as women, they put others before themselves. The woman said she was inspired to make (and keep) her appointment and do something for herself. During these conversations, there is also the opportunity for women to learn more about breast cancer, such as identifying risk factors they weren’t aware of. One woman with a family his-
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tory of breast cancer came to a community health fair for a completely different issue, but when she saw our breast cancer survivor handing out information, made an appointment for a breast exam and mammogram. She said she had never thought about the importance of getting a baseline mammogram and being monitored at her age (she was in her late 30s) despite her family history. The results of her exam were fine, and she is now aware that she needs to be watched more closely and come in annually for exams. The program also provides survivors with a way to channel their passion for helping other women with breast cancer. “I am thankful that I had the people who helped me through my [breast cancer] journey during treatment,” said one survivor. “So now, as a survivor, I can make a difference by helping women in the community.”
CHALLENGES One of the main challenges of the program is recruiting survivors who are excited to volunteer and can articulate the exam process. Despite the $50/day stipend plus $15/day for transportation, we had to move aggressively to recruit survivors. As noted above, we sent an e-mail blast to our patient list and placed English and Spanish announcements in our newsletter and in the Bridgeport Hospital employee newsletter. Some women who expressed an interest had difficulty meeting their obligations when they were scheduled for programs, while others would have required a great deal of training, more than our lean staff had time for. Others were looking for a job with regular hours rather than irregular events that took place at different times, and on different days of the week, including weekends. Occasionally, a bilingual social worker from our partner organization CancerCare attended some of our programs. Ideally, a pool of volunteers with a variety of schedules would create more flexibility and provide backup volunteers when someone’s schedule changed at work or at home. Because our nurse educators split their time with their duties as nurse navigators, the program would also benefit from a person dedicated solely to education who could also train survivors as volunteers. LOOKING FORWARD Because we see many of the same women at the food pantry each month, we are now trying to reach out to women whom we don’t see by pro-
viding men from the community with a packet of information. Our hope is that it will reach the adult women in their family. The packet contains an informational pamphlet, a bracelet with our name, and other items. These small tokens are meaningful to individuals who have so little. Women can learn about the center and contact us through the church. In the future, we see replicating the program at other food banks on a monthly basis. We also continue to experiment with new venues. Once the program was established, we were able to attract additional grant funding for expenses such as grocery store debit cards, stipends for survivors, and teaching materials. We will continue to explore new grant opportunities as the program grows. g
REFERENCES 1. US Census Bureau. American Community Survey, 2005-09. http://www.census.gov/acs/www/data_documentation/2009 _5yr_data/. Accessed April 8, 2012. 2. Connecticut Cancer Partnership. Connecticut Comprehensive Cancer Control Plan, 2005-08. Hartford, CT: Connecticut Cancer Partnership; 2005. 3. Connecticut Affiliate of Susan G. Komen for the Cure. Community Report, 2009. Hartford, CT: Connecticut Affiliate of Susan G. Komen for the Cure; 2010. 4. Connecticut Department of Public Health. Cancer Incidence in Connecticut Towns, 2000-2003. Hartford, CT: Connecticut Department of Public Health; 2006. 5. Connecticut Department of Public Health. Connecticut Health Disparities Project. The 2009 Connecticut Health Disparities Report. Hartford, CT: Connecticut Department of Public Health; 2009. 6. Latino Policy Institute. A Profile of Latino Health in Connecticut. Hartford, CT: Hispanic Health Council; 2006. 7. Centers for Disease Control and Prevention. CDC health disparities and inequalities report—United States 2011. MMWR Morb Mortal Wkly Rep. 2011;60(suppl):1-116. 8. Buki LP, Selem M. Cancer screening and survivorship in Latino populations: a primer for psychologists. In: Villarruel FA, Carlo G, Grau JM, et al, eds. Handbook of U.S. Latino Psychology. Thousand Oaks, CA: Sage Publications Inc; 2009:363-368. 9. Avon Foundation for Women. Breast cancer rates questioned in Latina population. http://www.avonfoundation.org/ press-room/breast-cancer-rates-questioned-in-latina-population.html. Accessed July 25, 2011. 10. Saad-Harfouche FG, Jandorf L, Gage E, et al. Esperanza y Vida: training lay health advisors and cancer survivors to promote breast and cervical cancer screening in Latinas. J Community Health. 2011;36:219-227. 11. Sudarsan NR, Jandorf L, Erwin DO. Multi-site implementation of health education programs for Latinas. J Community Health. 2011;36:193-203. 12. Connecticut Department of Public Health. Federal shortage designation information, CT towns. http://www.ct.gov/ dph/lib/dph/practitioner_licensing_and_investigations/plis/jvis a/designatedareas.pdf. Accessed July 25, 2011.
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WEB SITE REVIEW
THE NATIONAL COMPREHENSIVE CANCER NETWORK AND NCCN MEMBER INSTITUTIONS ®
By Lillie D. Shockney, RN, BS, MAS
he National Comprehensive Cancer Network® (NCCN®) is a nonprofit alliance of 21 of the world’s leading cancer centers. With the contributions of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to members of the healthcare system. As an arbiter
There is a wealth of information on NCCN’s Web site for healthcare professionals...including screening criteria, surveillance guidelines, and treatment guidelines.... of high-quality cancer care, the NCCN promotes continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other healthcare decision-makers. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and effi-
APRIL 2012 • VOLUME 3, ISSUE 2
ciency of oncology practice so patients can live better lives. Each year at NCCN Member Institutions, more than 160,000 new patients receive cancer care from world-renowned experts who are recognized for dealing with complex, aggressive, or rare cancers. NCCN Member Institutions pioneered the concept of the multidisciplinary team approach to patient care and continue to integrate programs in patient care, research, and education. Forty-one Nobel Prize winners have served on the faculties of NCCN Member Institutions. There is a wealth of information on NCCN’s Web site for healthcare professionals (www. nccn.org), including screening criteria, surveillance guidelines, and treatment guidelines that have now been expanded to include survivorship care guidelines. There is also a specific Web site for patients (www.nccn.com) that provides a listing of the Member Institutions and information in layman’s terms that helps patients understand the phases of treatment and what they might expect as they embark on their own cancer care. g
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Pushing Your Limits
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