August 2012, Vol 3, No 4

AUGUST 2012

www.AONNonline.org

VOL 3, NO 4

ORIGINAL RESEARCH Lymphedema Knowledge and Practice Patterns Among Oncology Nurse Navigators

SPECIAL SECTION Third Annual AONN Conference Abstracts

CLINICAL PRACTICE Navigation Principles Across the Continuum

TM

NAVIGATING PATIENTS ACROSS THE CONTINUUM OF CANCER CARE

© 2012 Green Hill Healthcare Communications, LLC

The median age of patients in the VISTA‥ trial was 71 years (range: 48-91).

VISIT VISIT US US AT AT A AONN ONN 3rd 3rd ANNUAL ANNUAL CONFERENCE CONFERENCE << OPTIONAL VIOLATOR>> BOOTH BOOTH 102 102 TTO O LEARN LE ARN MORE MORE

Survival never gets old VELCADE® (bortezomib) delivered >13-month overall survival advantage in combination with MP* vs MP alone for previously untreated multiple myeloma (median 56.4 vs 43.1 months†; 60.1-month median follow-up‡)

Approved for subcutaneous and IV administration§ VELCADE (bortezomib) Indication and Important Safety Information INDICATION

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CONTRAINDICATIONS ADVERSE REACTIONS WARNINGS, PRECAUTIONS, AND DRUG INTERACTIONS ▼

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Living Proof

Brief Summary INDICATIONS: VELCADE® (bortezomib) for Injection 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.

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.

Use in Pregnancy: Pregnancy Category D. Women of childbearing potential should avoid becoming pregnant while being treated with VELCADE. 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 (bortezomib) 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 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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LETTERS FROM LILLIE

Editor-in-Chief

AONN’S THIRD ANNUAL CONFERENCE: Helping You Prepare for New Standards of Care

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 shockli@jhmi.edu

Dear Colleague,

Section Editors

A

s summer winds down, our AONN conference in September draws even closer.

I am very excited about the agenda that is planned for you and hope that you can join me in learning more about navigation and survivorship care from experts who will share their wisdom with us!

At Johns Hopkins, we recently had our triennial survey from the American College of Surgeons, representing the Commission on Cancer, which accredits cancer centers, like our own, as NCI-designated comprehensive cancer centers. In 2012, for the first time, they requested information regarding our oncology navigation program and our cancer survivorship care processes. And as you probably know, in 2015, all cancer centers will need to demonstrate that these programs and services are fully up and running for cancer patients being treated within your various facilities and settings. This really made the new standards of care “feel real,” and I am actually pleased to see that such standards are now part of the accreditation process. This also should help to support your own position as patient navigators, given that this will become not an optional service but a required role with specific functions to be performed on behalf of your cancer patients. It does require, however, careful documentation of what you do, how you do it, and how it correlates to measurable results.

I am confident that this year’s conference will provide insight into how to make navigation and survivorship work even better at your institutions. The conference will provide great speakers and poster presentations on various subjects associated with navigation and survivorship that will give you valuable ideas to replicate “back home.” Some of the abstracts that will be presented at the conference can be found within this issue of the journal; these abstracts will give you an idea of what information will be covered in poster presentations this year. I look forward to seeing you September 14-16, 2012, in Phoenix!

We also want to see more manuscript submissions for consideration in this journal. Even if you have never published before, please consider writing an article for publication. g

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 Nurse Navigator Botsford Cancer Center

With best regards,

MISSION STATEMENT

Lillie D. Shockney, RN, BS, MAS Editor-in-Chief

AONNONLINE.ORG

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.

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

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PUBLISHING STAFF SENIOR VICE PRESIDENT, SALES & MARKETING

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TABLE OF CONTENTS

AUGUST 2012 • VOL 3, NO 4

MANAGING EDITOR

Jim Scelfo jim@greenhillhc.com EDITORIAL ASSISTANT

Jennifer Brandt

ORIGINAL RESEARCH

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SENIOR COPY EDITOR

Lymphedema Knowledge and Practice Patterns Among Oncology Nurse Navigators

By Mei R. Fu, PhD, RN, ACNS-BC; Joanne C. Ryan, RN, MS; Charles M. Cleland, PhD

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circulation@greenhillhc.com Journal of Oncology Navigation & Survivorship, ISSN 21660999 (print); ISSN 2166-0980 (online), is published 6 times a year by Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512.

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), 1249 South River Road, Suite 202A, Cranbury, NJ 08512. E-mail: jim@greenhill hc.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, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. 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.

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AUGUST 2012 • VOLUME 3, ISSUE 4

SPECIAL SECTION

18

Third Annual AONN Conference Abstracts

CLINICAL PRACTICE

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Navigation Principles Across the Continuum

By Sharon Gentry, RN, MSN, AOCN, CBCN

ABOUT THE COVER Tree of Hope Pastel by a Family Member, Friend or Caregiver Colorado Artwork from the Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition (www.LillyOncologyOnCanvas.com).

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www.BMSAccessSupport.com w ww.BMSAccessSupport.com Bristol-Myers Squibb Oncology is committed to helping appropriate patients get access to our medications by providing reimbursement support services for healthcare professionals.

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Bristol-Myers Bristol-Myers Squibb and its agents ag gents mak make e no guar guarantee antee rregarding egarding rreimbursement e eimbur sement ffor or any servic service e or it item. em.

Bristol-Myers Bristol-Myers Squibb | © 2012 Bristol-Myers Bristol-Myers Squibb; All rights reserved. reserved. | ONUS12UBP109701 03/12

ORIGINAL RESEARCH

Lymphedema Knowledge and Practice Patterns Among Oncology Nurse Navigators

By Mei R. Fu, PhD, RN, ACNS-BC; Joanne C. Ryan, RN, MS; Charles M. Cleland, PhD New York University

Abstract: Cancer survivorship is a continuum spanning diagnosis, treatment, and recovery. Oncology nurse navigators educate and support cancer survivors who face long-term adverse effects of cancer treatment such as lymphedema. This Web-based study investigated the knowledge, perceived competence, and practice patterns of lymphedema care of oncology nurse navigators. Invitation to the study was sent to 2510 randomly selected nurses who were likely to provide lymphedema care. A total of 238 nurses in clinical practice constituted the final sample for analysis. Oncology nurses were grouped according to primary nursing role: oncology nurse navigators, advanced practice nurses, directors/ managers/coordinators, and staff nurses. Perceived knowledge and perceived competence in lymphedema risk reduction, treatment, and self-management were evaluated as well as practice patterns of lymphedema care and actual lymphedema knowledge. Analyses included descriptive, comparative, and logistic regression. A strong relationship between perceived knowledge and perceived competence for all 3 areas of lymphedema care was identified. Oncology nurse navigators demonstrated the highest perceived knowledge and perceived competence in lymphedema risk reduction and had increased odds of providing education regarding lymphedema risk reduction compared with the other nurse groups. Overall, actual knowledge of lymphedema was relatively low, but oncology nurse navigators had more actual knowledge than other nurses. Oncology nurse navigators also had increased odds of delivering lymphedema risk reduction when compared with other nurses. Through education and support, oncology nurse navigators can make valuable contributions to cancer survivors and positively impact cancer survivorsâ&#x20AC;&#x2122; quality of life.

T

he American Cancer Society estimates that over 1.6 million new cases of cancer will be diagnosed in the United States in 2012.1 These individuals will face the challenges of cancer diagnosis and treatment as well as survivorship or mortality. Early diagnosis and advances in treatment have increased cancer survival rates. The Centers for Disease Control and Prevention reports that approximately 66% of cancer patients are expected to live for 5 years or more after their diagnoses.2 Over 11 million cancer survivors are living in the United States.2 As survival time has lengthened, patients with cancer are facing unexpected burdens accompanying their survival, such as long-term adverse effects of cancer treatment.

One of these long-term adverse effects is lymphedema,3 a chronic and incapacitating condition resulting from cancer treatments such as surgery (tumor excision or lymphadenectomy) and/or radiation therapy.4 Lymphedema can affect patients with a variety of cancers including head and neck, melanoma, breast, prostate, genitourinary, and gynecological.4 The incidence rates for lymphedema vary, ranging from 1% to 48%

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AUGUST 2012 â&#x20AC;˘ VOLUME 3, ISSUE 4

depending on the type of cancer, location, and treatment as well as the definition and measurement of lymphedema.4,5 With up to 40% of breast cancer survivors facing the daily challenges of lymphedema,4,5 reducing the risk of breast cancerâ&#x20AC;&#x201C; related lymphedema and promoting self-management of the condition becomes a significant concern for patients and healthcare providers.

Treatment of lymphedema has been, and continues to be, a major healthcare challenge since no surgical or medical treatment can cure this chronic condition.6 The current standard of care in treating lymphedema in the United States is complete decongestive therapy (CDT), typically including manual lymph drainage, multilayer compression bandaging, remedial exercise, meticulous skin care, compression garments, and patient education.7,8 CDT requires that patients make a daily commitment to alleviate swelling and symptoms, as well as to prevent acute exacerbations by using external compression (sleeve, glove, wrap, bandage, or pump), performing remedial exercises and lymphatic self-massage, and conducting skin care.7 All these activities con-

AONNONLINE.ORG

ORIGINAL RESEARCH

stitute daily self-management for individuals living with lymphedema. Timely and continuing patient education is essential to assist patients in initiating risk-reduction and self-management activities.

Research has shown that patient education has the effect of lessening the burden of this condition in terms of symptom experience and quality of life9-12 (QOL). Oncology nurse navigators have been recognized as patient educators and information providers,13 and as knowledgeable regarding referral sources; however, it is unknown whether oncology nurse navigators are equipped with adequate knowledge and are actively involved in providing lymphedema care for cancer survivors.

BACKGROUND Cancer survivorship is considered a continuum spanning cancer diagnosis, treatment, and recovery along which long-term or late adverse effects of cancer treatment, such as lymphedema, may manifest themselves and affect the patients’ quality of survival. As a serious chronic condition associated with cancer treatment, lymphedema can be disfiguring and painful, as well as cause long-term physical, psychological, social, and financial problems.14-17 These problems not only directly impact survivors’ QOL but also pose difficulties for survivors in assimilating their cancer experience and moving on with life.10,16 Recent meta-analysis of 98 studies investigating the association of breast cancer treatment factors with lymphedema identified mastectomy, extent of axillary dissection, radiation, and presence of positive nodes as being significantly associated with increased risk of developing lymphedema.3 Such risk factors are directly related to cancer treatment, yet may be largely unavoidable for cancer patients. There are also known risk factors for lymphedema that are not directly related to cancer treatment. These non–cancer-treatment–related risk factors, such as infections, minor injury or trauma to the affected limb, overuse of the affected limb, obesity, and air travel, may actually be avoidable.7 For decades, the salient issue influencing the impact of lymphedema on cancer survivors was whether survivors received information about lymphedema from their healthcare providers. In the early 1990s, 90% of breast cancer survivors denied receiving basic information concerning their risk of developing lymphedema and expressed frustrations and concerns regarding

AONNONLINE.ORG

lack of lymphedema education.18 More than 10 years later, about 50% of breast cancer survivors were being provided with lymphedema information.9 Those who received lymphedema information reported fewer symptoms and scored higher in lymphedema knowledge testing.9 The model of patient navigation was initiated

by Dr Harold Freeman (a surgeon in Harlem in New York City) to help patients navigate through the complexities of the healthcare system.19 The role of oncology nurse navigator has evolved to include functioning as the care coordinator who guides patients throughout their cancer experience by assisting patients in understanding their disease and treatment, educating about adverse treatment effects, planning for end-of-life care, or managing life as a cancer survivor.19 We hypothesized that oncology nurse navigators may play a role in lymphedema care in terms of lymphedema risk reduction, treatment, and self-management.

To test our hypothesis, we focused our data analysis on lymphedema knowledge, practice patterns, and predictors among oncology nurse navigators and other nurses in clinical practice. Data for the current analysis were from a larger study investigating the practice patterns for lymphedema care and predictors of those practice patterns among oncology nurses.20

In the early 1990s, 90% of breast cancer survivors denied receiving basic information concerning their risk of developing lymphedema...

METHODS The Investigational Review Board of New York University approved this Web-based study. The study utilized a cross-sectional and correlational design. Participants were recruited through an e-mail invitation sent by the Oncology Nursing Society (ONS). ONS sent invitations to 2510 randomly selected oncology nurses who were in clinical practice and likely to provide lymphedema care to ensure a sample of at least 200 participants in the study. Invitations were e-mailed to randomly selected nurses from the ONS Breast, Lymphedema Management, Surgical Oncology, Radiation Therapy, and Advanced Nurse Practitioner Special Interest Groups.

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ORIGINAL RESEARCH

The study questionnaires were developed by 7 lymphedema experts, consisting of 27 main items assessing lymphedema practice patterns, perceived knowledge and perceived competence (15 items), as well as demographic questions regarding nursing experience and current primary nursing roles (12 items). A combination of different question formats was used. Assessment of perceived knowledge and perceived competence focused on the 3 key aspects of lymphedema care, including risk reduction, treatment, and self-management. An optional 20 questions were designed to evaluate actual knowledge of lymphedema care.

Study data were downloaded by the ONS IT staff using Microsoft Excel files and were verified for data accuracy using the human-in-the-loop method.9,20,21 Data regarding demographic information and responses to questions related to oncology nursesâ&#x20AC;&#x2122; knowledge, competence, and practice patterns were analyzed using descriptive and comparative analyses with R software,22 including chi-square test, Fisher exact test, Kruskal-Wallis rank sum, and Pearson correlations. Logistic regression models with R software22 were used to predict practice patterns. All statistical tests were 2 sided, with statistical significance set at 0.05 and 95% confidence intervals (CIs).

Assessment of perceived knowledge and perceived competence focused on the 3 key aspects of lymphedema care, including risk reduction, treatment, and self-management.

RESULTS Of the 2510 nurses who received e-mails, only 529 nurses opened the e-mail, and 256 (48%) of those completed the study. The self-reported primary nursing roles of the 256 participants included oncology nurse navigator (21), case manager (5), academic educator (9), nurse practitioner (32), clinical nurse specialist (41), clinical trials nurse (3), consultant (2), director/manager/coordinator (39), staff nurse (100), and other (4). In order to be included in the current study, nurses needed to have an active clinical practice role; therefore 18 participants were excluded as their primary nursing roles did not meet these criteria

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(such as academic educator, consultant, nurse recruiter, etc). Thus only 238 oncology nurses were included in the study. These 238 oncology nurses were grouped according to their self-reported primary nursing role (staff nurse, director/manager/coordinator, nurse practitioner, clinical nurse specialist, nurse navigator). Since the primary nursing roles for oncology nurse navigators and case managers were similar, the 5 case managers were included in the oncology nurse navigator group, resulting in 10.1% of the participants being oncology nurse navigators (n = 26).

Most study participants were female oncology nurses 45 to 60 years of age who had more than 20 years of oncology nursing experience, with their highest nursing education at or above a bachelorâ&#x20AC;&#x2122;s degree. Practice setting was primarily outpatient medical oncology with adult cancer patients in the United States (Table 1). In comparison with nurses who had other primary nursing roles, oncology nurse navigators were similar by age, level of nursing education, practice setting, and years of oncology experience; there was no significant difference between oncology nurse navigators and other nurses with other primary nursing roles.

Self-Reported Perceived Knowledge and Perceived Competence For each area of lymphedema care, a strong association between perceived knowledge and perceived competence was found risk reduction (r = 0.89; 95% CI, 0.85-0.90; P <.05), treatment (r = 0.75; 95% CI, 0.68-0.79; P <.05), and selfmanagement (r = 0.86; 95% CI, 0.82-0.88; P <.05). Therefore, nurses with a high level of perceived knowledge were likely to have a high level of perceived competence in each area of lymphedema care.

Nonparametric permutation tests23 were conducted to investigate potential differences in the perceived knowledge and perceived competence of the oncology nurse navigators versus those in other primary nursing roles. Oncology nurse navigators reported significantly higher perceived knowledge (P = .033) and perceived competence (P = .036) in lymphedema risk reduction. There were no significant differences between oncology nurse navigators and nurses in other primary nursing roles for lymphedema treatment and self-management. Overall, ratings of perceived knowledge and perceived competence in lymphedema treatment were low for all groups (Figures 1 and 2).

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Actual Lymphedema Knowledge The actual knowledge of oncology nurses regarding lymphedema disease and lymphedema care were evaluated by 20 items that focused on the lymphatic system, as well as strategies for lymphedema risk reduction, treatment, measurement, and management. Table 2 shows the knowledge area for each item, as well as the percentage of nurses giving the correct answer to each item for oncology nurse navigators in comparison with oncology nurses having other primary nursing roles.

Percentage of oncology nurses giving a correct answer ranged from 14.2% to 96.2% across the 20 items. The knowledge item with the lowest percentage of nurses answering correctly addressed the general lymphatic system (range, 14.2%19.2%), and the question with the highest percentage of nurses answering correctly tested the characteristics of lymph nodes (83.5%-96.2%).

There were no significant differences on individual knowledge items by the Fisher exact test.

Further analyses of actual lymphedema knowledge were conducted comparing oncology nurse navigators with nurses having other primary nursing roles. The nonparametric Kruskal-Wallis rank sum test revealed that the oncology nurse navigators had significantly higher actual knowledge than oncology nurses having other primary nursing roles (P = .011). On average, the oncology nurse navigators answered 13.7 of the 20 questions correctly, while oncology nurses having other primary nursing roles anwered 11.9 of the 20 questions correctly. On the whole, there was a small but significant advantage for oncology nurse navigators in total knowledge, yet there was no specific item on which they demonstrated superiority.

Practice Patterns of Lymphedema Care To describe and identify possible predictors for nursing practice patterns of lymphedema care, logistic regression analyses were conducted.

Perceived competence in each of the 3 aspects of lymphedema care predicted the practice of lymphedema risk reduction, treatment, and management. Specifically, having a higher perceived competence in risk reduction significantly increased the odds of providing risk reduction education (odds ratio [OR] = 2.56; 95% CI, 1.863.65; P <.01). The same was true for higher perceived treatment competence, which significantly increased the odds of providing education about lymphedema treatment (OR = 1.37; 95%

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Table 1 Demographic Characteristics of the Sample (n = 238) Demographic Variable n (%) Age 25-29 4 (1.7) 30-34 14 (5.9) 35-39 12 (5.0) 40-44 16 (6.7) 45-49 50 (21.0) 50-60 119 (50) >60 23 (9.7) Gender Male 2 (0.8) Female 236 (99.2) Highest Nursing Degree Diploma 20 (8.4) Associate 36 (15.1) Bachelor’s 87 (36.6) Master’s or higher 95 (39.9) Primary Work Settinga Inpatient 32 (13.4) Inpatient – Medical Oncology Unit 23 (9.7) Inpatient – Surgical Oncology Unit 19 (7.9) Outpatient – Hospital-Based Clinic 101 (42.4) Outpatient – Physician’s Office/Infusion Center 65 (27.3) Outpatient – Radiation; Freestanding 2 (0.8) Outpatient – Radiation; Hospital-Based 6 (2.5) Other 25 (10.5) Primary Patient Setting Adult 236 (99.2) Adult and Pediatric 2 (0.8) Pediatric 0 (0.0) Practice in the United States No 5 (2.1) Yes 233 (97.9) Years of Oncology Nursing Experience <1 0 (0.0) 1-2 6 (2.52) 3-4 6 (2.52) 5-10 78 (32.8) 11-20 53 (22.3) >20 95 (39.9) a Some participants selected more than 1 category.

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ORIGINAL RESEARCH

Figure 1 Perceived Knowledge by Position of Lymphedema Self-Management, Treatment, and Risk Reduction

Perceived Knowledge by Position and Task Self-Management

Treatment

Risk Reduction

1.0

Proportion of Nurses With High Perceived Competence (4 or 5 of 5)

0.8

0.6

0.4

0.2

0.0

Nurse Clinical Staff Nurse Practitioner Nurse

Director/ Nurse Manager/ Navigator

Specialist Coordinator

Nurse Clinical Director/ Staff Nurse Nurse Practitioner Nurse Manager/ Navigator Specialist Coordinator

CI, 1.01-1.87; P <.01) and for higher perceived competence in self-management, which significantly increased the odds of providing education regarding self-management (OR = 1.56; 95% CI, 1.2-2.05; P <.01).

When compared with oncology nurses having other primary nursing roles, the oncology nurse navigators had increased odds of educating patients about lymphedema risk reduction (OR = 5.62; 95% CI, 1.47-37.32). Although not statistically significant, there was an increase in the odds of oncology nurse navigators providing education on lymphedema treatment (OR = 2.36; 95% CI, 0.91-5.85). Being an oncology nurse navigator did not change the odds of providing education on lymphedema self-management in comparison with oncology nurses having other primary nursing roles (OR = 0.76; 95% CI, 0.29-1.89).

DISCUSSION Cancer patients are at risk throughout their lives for lymphedema, and its negative impact can be significant.12 Understanding lymphedema risk reduction, treatment, and self-management is key for clinicians to provide cancer survivors with the

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Nurse Clinical Staff Nurse Practitioner Nurse

Director/ Nurse Manager/ Navigator

Specialist Coordinator

necessary education, guidance, and support. While some cancer treatment–related risk factors for lymphedema are largely unavoidable, it is possible to avoid major, non–treatment-related risk factors such as infections, obesity, and injury/trauma to the affected area. Through assessment and patient education, oncology nurse navigators can contribute to the prevention of lymphedema. It is therefore critical that oncology nurse navigators are well equipped with adequate knowledge in lymphedema care.

Fortunately, the results of this study indicated that the oncology nurse navigators had statistically significantly higher actual knowledge of lymphedema care in comparison with other oncology nurses. Oncology nurse navigators had the highest self-ratings in perceived knowledge and perceived competence in lymphedema risk reduction and were found to have the greatest odds of providing education regarding lymphedema risk reduction.

The Institute of Medicine recommends that every patient with cancer receive an individualized survivorship plan.24 To achieve this goal, it is important for healthcare providers, including oncology nurse navigators, to be knowledgeable

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Figure 2 Perceived Competence by Position of Lymphedema Self-Management, Treatment, and Risk Reduction

Perceived Competence by Position and Task Self-Management

Treatment

Risk Reduction

1.0

Proportion of Nurses With High Perceived Competence (4 or 5 of 5)

0.8

0.6

0.4

0.2

0.0

Nurse Clinical Staff Nurse Practitioner Nurse

Director/ Nurse Manager/ Navigator

Specialist Coordinator

about the challenges and opportunities faced by cancer survivors.25 Oncology nurse navigators who are well equipped with knowledge can ensure effective delivery of lymphedema education and care, an important part of the survival plan. In this way, timely and ongoing patient education could serve as an important measure to address the feelings of abandonment and frustration due to lack of support from healthcare professionals.26,27 While lymphedema can occur following treatment of a variety of tumors, there is limited research and knowledge about this disorder beyond breast cancer. Therefore, this study did not investigate the knowledge and practice of lymphedema care related to specific types of cancers but rather explored oncology nursesâ&#x20AC;&#x2122; knowledge and practice patterns associated with cancer-related lymphedema in general.

RECOMMENDATIONS Overall, the lymphedema knowledge level across the oncology nurse groups was low, although oncology nurse navigators had higher knowledge and perceived competence. To improve knowledge and perceived competence, it is critical to ensure

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Nurse Clinical Director/ Staff Nurse Nurse Practitioner Nurse Manager/ Navigator Specialist Coordinator

Nurse Clinical Staff Nurse Practitioner Nurse

Director/ Nurse Manager/ Navigator

Specialist Coordinator

that professional education opportunities are available for oncology nurses, including oncology nurse navigators, to learn about lymphedema and lymphedema care. Professional organizations, such as the Oncology Nursing Society, the Academy of Oncology Nurse Navigators, and the National Coalition of Oncology Nurse Navigators, should take action for their members, such as providing online courses and conference symposia dedicated to lymphedema care.

As key members of the multidisciplinary team caring for cancer survivors, oncology nurse navigators should share their knowledge about lymphedema with other healthcare professionals.

Such knowledge sharing is paramount in narrowing the knowledge gap between the oncology nurse navigators and the other oncology nurse groups. A number of established resources for lymphedema care currently exist, and oncology nurse navigators can take advantage of these to better equip themselves. Such resources include the National Lymphedema Network, the StepUpSpeakOut Organization, the Oncology Nursing Societyâ&#x20AC;&#x2122;s Lymphedema Special Interest Group, and the American Lymphedema Framework Project.

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Table 2 Actual Knowledge of Lymphedema for Nurse Navigators Versus Nonâ&#x20AC;&#x201C;Nurse Navigators Combined % Correct Answers for NN (n = 26)

Mean % Correct Answers for Non-NN Combined (n = 212)

Mean % Correct Answers for All Subgroups Combined (n = 238)

General function of lymphatic system Lymph node characteristics

19.2 96.2

12.7 83.4

14.0 84.9

Impact of deep breathing exercises on the lymphatic system

23.1

30.0

29.4

Common causes of secondary lymphedema in the United States

76.9

62.7

64.3

Patient at risk for developing lymphedema

46.2

41.5

42.0

Injections in affected limbs

96.2

81.6

83.2

Blood pressure measurements in lower extremities of patient with double mastectomy

30.8

23.6

24.4

Risk-reduction education Lymphedema symptom reporting

96.2 88.5

87.7 71.7

88.7 73.5

Lymphedema risk following breast cancer treatment

76.9

67.5

68.5

Complete decongestive therapy

88.5

74.1

75.6

Nursing intervention for patient complaint of heaviness in limb Management

80.8

62.7

64.7

Lymphedema and risk of cellulitis

69.2

50.9

52.9

Lymphedema and safe exercise

84.6

75.9

76.9

Education about symptom reporting

76.9

62.3

63.9

Education for self-managed skin care

92.3

82.5

83.6

Education on self-management of compression therapy Exercise in self-management

84.6

75.5

76.5

76.9

62.7

64.3

Diagnostic criteria for lymphedema

38.5

38.7

38.7

Contraindications to bioelectrical impedance

30.8

41.0

39.9

Key Knowledge Area Lymphatic System

Risk Reduction

Treatment

Measurement

NN = nurse navigator.

In summary, knowledge of lymphedema and lymphedema care is vital to enhance the role of oncology nurse navigators. Oncology nurse navigators should initiate lymphedema education and risk assessment with their patients. These activities, if done in the clinical setting, have the poten-

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tial to contribute to the early identification and prompt treatment of lymphedema. As a consistent contact person for patients moving along the continuum of cancer care, oncology nurse navigators can be a source of information, the hub of communication, and the facilitator of

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action. By doing so, they can ensure that both patients and clinicians are engaged in the practice of lymphedema care to include the sharing and reinforcing of lymphedema knowledge and the motivation of cancer survivors to perform lymphedema risk reduction and self-care.

Through this action, oncology nurse navigators can make a critical contribution to cancer survivors and can have a positive impact on cancer survivors’ quality of life. g Author Notes Mei R. Fu, Associate Professor; Charles M. Cleland, Senior Biostatistician; Joanne C. Ryan, Doctoral Student; all from the College of Nursing, New York University.

Acknowledgments The authors wish to acknowledge the Oncology Nursing Society Research Team, Dr Margaret Irwin, and staff for their assistance in administering the Web-based study. The authors also wish to give thanks to Dr Sheila Ridner, Ms Ellen Poage, and Ms Marcia Beck for reviewing the study questionnaires, and to all of the nurses who participated in this study.

Corresponding Author Mei R. Fu, PhD, RN, ACNS-BC, College of Nursing, New York University, 726 Broadway, 10th Floor, New York, NY 10003; e-mail: mff67@nyu.edu.

Disclosures Mei R. Fu, PhD, RN, ACNS-BC, has no conflict of interest or financial interest to disclose.

Charles M. Cleland, PhD, has no conflict of interest or financial interest to disclose. Joanne C. Ryan, RN, MS, is an employee of Pfizer, Inc, and a PhD student at New York University. The primary research and generation of this publication present no conflict with her employment as it does not relate to any product or service.

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Atlanta, GA: American Cancer Society; 2012. www.cancer. org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-031941.pdf. Accessed March 3, 2012.

2. Centers for Disease Control and Prevention. Cancer Survivors – United States 2007. MMWR Morb Mort Wkly Rep. 2011; 60:269-272.

3. Tsai RJ, Dennis LK, Lynch CF, et al. The risk of developing arm lymphedema among breast cancer survivors: a meta-analysis of treatment factors. Ann Surg Oncol. 2009;16:1959-1972.

4. Cormier JN, Askew RL, Mungovan KS, et al. Lymphedema

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beyond breast cancer: a systematic review and meta-analysis of cancer-related secondary lymphedema. Cancer. 2010;116:51385149.

5. Rockson SG, Rivera KK. Estimating the population burden of lymphedema. Ann N Y Acad Sci. 2008;1131:147-154.

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Lymphedema: part 1. Am J Nurs. 2009;109:48-54.

7. Radina EM, Fu MR. Preparing for and coping with breast cancer-related lymphedema. In: Vannelli A, ed. Novel Strategies in Lymphedema. In Tech – Open Access Company. www.inte chopen.com/books/novel-strategies-in-lymphedema/preparingfor-and-coping-with-breast-cancer-related-lymphedema.

8. Rockson SG, Miller LT, Senie R, et al. American Cancer Society Lymphedema Workshop Workgroup III: diagnosis and management of lymphedema. Cancer. 1998;83:2882-2885.

9. Fu MR, Chen CM, Haber J, et al. The effect of providing information about lymphedema on the cognitive and symptom outcomes of breast cancer survivors. Ann Surg Oncol.

2010;17:1847-1853.

10. Fu M, Axelrod D, Haber J. Breast-cancer-related lymphedema: information, symptoms, and risk-reduction behaviors.

J Nurs Scholarsh. 2008;40:341-348.

11. Ridner SH. Pretreatment lymphedema education and identified educational resources in breast cancer survivors. Patient Educ Couns. 2006;61:72-79.

12. Ridner SH, Dietrich MS, Kidd N. Breast cancer treatmentrelated lymphedema self-care: education, practices, symptoms, and quality of life. Support Care Cancer. 2011;19:631-637.

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15. Shih YC, Xu Y, Cormier JN, et al. Incidence, treatment costs, and complications of lymphedema after breast cancer among women of working age: a 2-year follow-up study. J Clin Oncol. 2009;27:2007-2014.

16. Pyszel A, Malyszczak K, Pyszel K, et al. Disability, psychological distress and quality of life in breast cancer survivors with arm lymphedema. Lymphology. 2006;39:185-192.

17. Paskett ED, Naughton MJ, McCoy TP, et al. The epidemiology of arm and hand swelling in premenopausal breast cancer survivors. Cancer Epidemiol Biomarkers Prev. 2007;16:775-782.

18. Woods M. Patients’ perceptions of breast-cancer-related lymphoedema. Eur J Cancer Care. 1993;2:125-128.

19. Freeman H. A model patient navigator program. Oncology Issues. 2004;19:44-46.

20. Ryan JC, Cleland CM, Fu MR. Predictors of practice patterns for lymphedema care among oncology advanced practice nurses.

J Adv Pract Oncol. In press.

21. Sollenberger RL, Willems B, Della Rocco PS, et al. Human-inthe-loop simulation evaluating the collocation of the user request evaluation tool, traffic management advisor, and controller-pilot data link communications: experiment 1 – tool combinations. US Department of Transportation. Federal Aviation Administration, Washington, DC. http://hf.tc.faa.gov/technotes/dot-faa-ct-tn0428.pdf. Accessed April 29, 2012.

22. R Development Core Team. R: a language and environment for statistical computing. R Foundation for Statistical Computing, Vienna, Austria. 2011. www.R-project.org/.

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From Cancer Patient to Cancer Survivor: Lost in Transition. http://books.nap.edu/openbook.php?record_id=11468&page= R1. Accessed April 8, 2012.

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Third Annual Navigation and Survivorship Conference PRELIMINARY AGENDA* Friday, September 14 12:45 – 1:00pm

1:00 – 2:00pm & 2:15 – 3:15pm

3:15 – 3:30pm 3:30 – 5:00pm

5:00 – 6:00pm 6:00 – 8:00pm

Welcome Conference Co-Chairs: Sharon Gentry, RN, MSN, AOCN, CBCN Lillie D. Shockney, RN, BS, MAS Pre-Conference Workshops Beginners Track • Core Principles of Navigation Nicole Messier, RN, BSN Pamela J. Vlahakis, RN, MSN, CBCN Members • Getting Excited about Research – Case Examples Linda Fleisher, PhD, MPH Elaine Sein, RN, BSN, OCN, CBCN • Panel Discussion: Building Optimal Community Outreach – Lay and Community Jean B. Sellers, RN, MSN (Moderator) Leah Leilani Beck, BS Jessica Denton, MSW • Implementing a Survivorship Program/Clinic Cynthia Waddington, RN, MSN, AOCN Break Administrators Track • Administering a Navigation Program Bonnie J. Miller, RN, BSN, OCN, FAAMA Elizabeth Whitley, PhD, RN Navigators Track • How Do Case Managers and Navigators Interface?

Nancy Skinner, RN-BC, CCM FREE TIME Welcome Reception/Posters in the Exhibit Hall

11:45 – 1:00pm 1:15 – 2:15pm

2:15 – 3:15pm

3:15 – 4:15pm

4:15 – 5:00pm

5:00 – 7:00pm 7:00pm

Sunday, September 16 7:30 – 8:30am 8:30 – 9:30am

Saturday, September 15 7:30 – 8:30am

8:30 – 8:45am 8:45 – 9:45am

9:45 – 10:00am 10:00 – 11:30am

Breakfast/Product Theater: ® New Route of Administration for Velcade supported by Millennium Pharmaceuticals, Inc. Welcome & Introductions Conference Co-Chairs General Session 1: Navigation Update: 2012 Current Regulations – Navigation & Survivorship Care Plan Linda Ferris, PhD Break Disease-Site–Specific Breakouts Stand-Alone Sessions • Breast Cancer Navigation Mary Rooney, RN, BSN, OCN • Thoracic Oncology Navigation Pamela Matten, RN, BSN, OCN • GI & Colorectal Cancer Navigation Maura Kadan, RN, MSN, OCN Coralyn Martinez, MSN, RN, OCN • GYN Cancer Navigation Robin A. Atkinson, RN, BSN, OCN

• Prostate Cancer Navigation Juli Aistars, RN, MS, APN, AOCN Rapid Fire Sessions with Panel • Head, Neck, & Neuro Navigation Heather Stern, RN, BSN, CNOR, OCN And • Hematology/Oncology Tina Scherer, RN, MSN, OCN Administrators Session • The Role of the Administrator Barbara Francks, RN, BSN, CBCN Lisa Shalkowski, RN, BSN, MSM Lunch in the Exhibit Hall Keynote Session: Beginning the Breast Reconstructive Journey: Importance of Reconstructive Surgery Referrals and Stateof-the-Art Oncoplastic Breast Reconstruction Steven Kronowitz, MD, FACS General Session 2: Best Practices in Survivorship Care Rehabilitation Julie Silver, MD General Session 3: Plenary Session Financial and Legal Issues for Our Cancer Patients David S. Landay, JD The Art of Exceptional Professional Performance – Making a Difference in Your Patients’ Lives Selinza Mitchell, RN Poster Award Reception in the Exhibit Hall Pamela Matten, RN, BSN, OCN Conclusion of Day – Networking FREE TIME

9:30 – 10:30am

10:30 – 10:45am 10:45 – 12:15pm

12:15 – 1:15pm 1:30 – 2:30pm

2:30 – 2:45pm

Breakfast Symposium/Product Theater General Session 4: Navigation in the Age of Personalized Cancer Care Sharon Gentry, RN, MSN, AOCN, CBCN Lillie D. Shockney, RN, BS, MAS General Session 5: Best Practices in Addressing Health Inequities Lauren Kelley, MSW, MPA Adrienne Lofton, RN, MSN Break Practice Setting – Panel Discussion with Moderator • Office-Based Roxanne Parker, RN, MSN, CPN (Moderator) • Academic Jessie Schol, RN, BSN, OCN • Community Hospital–Based Karyl Blaseg, RN, MSN, OCN Lunch in the Exhibit Hall Clinical Survivorship Guidance Mandi Pratt-Chapman, MA Katherine Sharpe, MTS Conclusion/Final Remarks Conference Co-Chairs *Preliminary agenda, subject to change.

September 14-16, 2012 Phoenix, Arizona Arizona Grand CONFERENCE CO-CHAIRS Sharon Gentry, RN, MSN, AOCN, CBCN Breast Health Navigator Derrick L. Davis Forsyth Regional Cancer Center Winston-Salem, NC

CONFERENCE REGISTRATION Register online: www.regonline.com/aonn2012 Conference Registration: $345 Includes Membership through September 30, 2013.

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.

Lillie D. Shockney, RN, BS, MAS University Distinguished Associate Professor of Breast Cancer Adm Director, Johns Hopkins Clinical Breast Programs Adm Director, Johns Hopkins Cancer Survivorship Programs Depts of Surgery and Oncology Associate Professor, JHU School of Medicine, Depts of Surgery, Oncology and Gynecology Associate Professor, JHU School of Nursing Johns Hopkins Avon Foundation Breast Center Baltimore, MD

FACULTY* Juli Aistars, RN, MS, APN, AOCN Robin A. Atkinson, RN, BSN, OCN Leah Leilani Beck, BS Karyl Blaseg, RN, MSN, OCN Jessica Denton, MSW Linda Ferris, PhD Linda Fleisher, PhD, MPH Barbara Francks, RN, BSN, CBCN Maura Kadan, RN, MSN, OCN Lauren Kelley, MSW, MPA Steven Kronowitz, MD, FACS David S. Landay, JD Adrienne Lofton, RN, MSN Coralyn Martinez, MSN, RN, OCN Pamela Matten, RN, BSN, OCN Nicole Messier, RN, BSN Bonnie J. Miller, RN, BSN, OCN, FAAMA

Roxanne Parker, RN, MSN, CPN Mandi Pratt-Chapman, MA Mary Rooney, RN, BSN, OCN Tina Scherer, RN, MSN, OCN Jessie Schol, RN, BSN, OCN Elaine Sein, RN, BSN, OCN, CBCN Jean B. Sellers, RN, MSN Lisa Shalkowski, RN, BSN, MSM Katherine Sharpe, MTS Julie Silver, MD Nancy Skinner, RN-BC, CCM Heather Stern, RN, BSN, CNOR, OCN Pamela J. Vlahakis, RN, MSN, CBCN Cynthia Waddington, RN, MSN, AOCN Elizabeth Whitley, PhD, RN *For full information visit www.aonnonline.org

• • • • •

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

SPONSORS This activity is jointly sponsored by AONN Foundation for Learning, Inc., Center of Excellence Media, LLC, and Medical Learning Institute, Inc.

COMMERCIAL SUPPORT ACKNOWLEDGMENT This activity is supported by educational grants from Celgene Corporation and Eisai Pharmaceuticals.

CONFERENCE OVERVIEW

REGISTERED NURSE DESIGNATION

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.

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.

www.regonline.com/aonn2012

THIRD ANNUAL AONN CONFERENCE ABSTRACTS

CATEGORY I: Patient Education Role of Navigation and Patient Education in the Treatment of Patients With Complex Cancers: Our Experience With Head and Neck Cancer Patients Barbara R. McHale, RN, BS, OCN, CBCN; Sabrina Mosseau, RN, BS, OCN; Anna Feldman, RN, OCN; Leslie Hurley, RN; Kelly Simpson, RN, OCN; Jacqueline MacLasco, RDCDM Samaritan Hospital Cancer Treatment Center, Troy, New York Background: At Samaritan Hospital Cancer Treatment Center, we realized that patients with a diagnosis of head and neck cancer were having trouble navigating the healthcare system prior to starting treatment. These patients were overwhelmed with scheduling consults, tests, and procedures before treatment could even begin. Many patients became frustrated and confused and did not show up for scheduled appointments or went to the wrong appointment. We recognized patients were not starting recommended treatment in a timely manner. The goal of our mission-oriented organization is to keep patients appropriately educated so we can give them the best care possible. In 2010, we started to streamline the process and developed a Head/Neck Cancer Patient Care Plan. At this time, a navigator was assigned to work with these patients, their families, and physicians. The top priority areas of concern were improving patient compliance in attending scheduled appointments, assigning a navigator as point of contact and care coordination, educating the patient and family about the treatment plan, reinforcing chemotherapy education, and reviewing side effects and symptoms. Also noted as important was incorporating detection and evidence-based symptom management as part of patient education. It is our goal to assist our patients in receiving treatment services in an equitable and timely manner, to remove barriers to their care, and to educate patients, thereby improving outcomes. Objectives: (1) Develop and implement a process to streamline scheduled appointments, tests, and procedures. (2) Incorporate navigator in patient care from time of initial diagnosis through the continuum of care. (3) Encourage compliance through education. (4) Increase the percentage rate of successful treatment through a systematic approach to symptom management. Methods: (1) Implemented a patient care plan for each head/neck cancer patient. (2) Assigned a navigator to each patient diagnosed with head/neck cancer. (3) Developed a chemotherapy education bag that each patient received that included an oral care protocol to promote early detection and management of stomatitis; information about chemotherapy-induced peripheral neuropathy and recommendations for management, including safety concerns and prevention of falls; a skin care protocol to promote early detection and management of dermatitis secondary to chemotherapy/biotherapy and radiation treatments; an explanation of neutropeniaâ&#x20AC;&#x201D;what it is and what it means to patients and their families. (4) Developed a color-coded chart featuring 3 zones to visually indicate for patients and their families what should be done under various circumstances. The green zone indicates being at goal and stable; the yellow zone indicates caution and lists symptoms that mean a doctor should be called; the red zone lists symptoms that require calling 911 or taking the patient to the emergency room. (5) Developed a nutritional tip sheet for patients who are undergoing treatment in order to educate patients in managing taste dysfunction and changes in eating habits. Included is a copy of a BMI chart that nurses use when assessing patients. (6) Implemented a chemotherapy class that patients and families can attend in addition to initial individual chemotherapy instruction. This class optimizes the learning experience and standardizes education given to patients. Results and Conclusions: Implementation of the Head/Neck Cancer Patient Care Plan closed the information gap, coordinated care, and decreased wait time for treatment initiation.

Patient compliance increased, and appointments that were scheduled were attended, enabling patients to complete recommended treatment.

Involving the navigator at the initial diagnosis and throughout the care continuum further strengthened this process. Time from diagnosis to treatment initiation decreased from an average of 45.38 days in 2009, to 19.20 days in 2010, and 12.60 days in 2011. The education materials provided with protocols for detection and management of stomatitis, skin care, peripheral neuropathy, and neutropenia provided patients with tools they needed to help be responsible for their own care. We developed and implemented a prechemotherapy and postchemotherapy class survey that further validated the importance of reinforced, standardized education. The creation of consistent messages and patient education and the development of the Head/Neck Cancer Patient Care Plan have led to improved care coordination and better outcomes for our patients.

A Team Approach to the Development of an Educational Survivorship Program Led by an Advanced Practice Nurse in a Community Cancer Center Carol Blecher, RN, MS, AOCN, APNC, CBPN-C; Barry S. Levinson, MD; Nancy DiLiegro, PhD, FACHE; Sonal Bahl, CBPN-C; Cheryl Wachtel, RD Trinitas Comprehensive Cancer Center, Elizabeth, New Jersey Background: According to data released by the National Cancer Institute and Centers for Disease Control and Prevention, there were 11.7 million cancer survivors in the United States in 2007, and these numbers continue to grow. Studies have shown that cancer survivors are faced with multiple challenges including psychosocial, physical, sexual/reproductive, relationship,

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CATEGORY I: Patient Education work, and financial issues. In order to meet the complex needs of these individuals, a multidisciplinary educational team approach is vital. Care must be coordinated within the team involving primary care physicians (PCPs), oncologists, social workers, dietitians, physical therapists, complementary therapists, and nursing staff. Quality of life (QOL) must be evaluated and care plans developed with a focus on the patient’s current needs as well as the standards set by the American College of Surgeons, National Accreditation Program for Breast Centers, American Society of Clinical Oncology, and Oncology Nursing Society. Objective: As is the case for many community hospitals, we are in a situation where we must do more with less, which requires working smarter. In order to develop a survivorship program that is valuable, the program must be utilized and deemed worthwhile by all participants.

Education for all participants is an important component of getting buy-in from all team members. Methods: We identified our core team which consists of the cancer center medical director, hospital administration, advanced practice nurse (APN), social worker, and nutritionist. Our “Stay Well Survivorship Program” consists of formal visits initially involving the APN, social worker, and nutritionist.

These visits include a physical assessment, QOL evaluation, survivorship care plan review, and nutritional counseling. Potential for referrals include genetic counseling, complementary therapy services, rehabilitation/fitness services, and financial counseling. Entry points and the referral system were identified. The role of the staff in the education and referral process was delineated. Patient education for this program is introduced at the initial treatment-planning visit with the presentation of a survivorship information packet, as well as through continuous educational/support programs for patients and their families. Education is ongoing for all hospital and cancer center nursing and medical staff regarding the issues surrounding survivorship as well as a review of the information provided in the Survivorship Care Plan (Journey Forward). Letters introducing the PCPs to the program as well as office outreach programs are planned to obtain commitment from this group. Evaluation of the program is ongoing through the use of customer satisfaction surveys.

Results/Conclusions: This program was initiated in 2010, with some referrals; but recently, with changes in the organizational structure of the Cancer Center, we have become more focused on the program, continuing its development from a wellness promotion perspective. Using current evidence, we are promoting a program of quality survivorship care for our patients, as well as a value-added service for PCPs.

Say Ahh! Making Sense of Oral Assessments for Mucositis Joanne Growney, RN, ANP-BC, MA, OCN; Phyllis McKiernan, RN, MSN, APN, OCN; Joan Colella, DNP, RN, APN-BC, NP-C; Claudia Douglas, RN, MA, CNN, APN-C; Annette Sinski, APN; Gina Dovi, BSN, RN, CPON; Laura Van De Putte, RN, BSN, CPON; Pamela Sutherland, MSN, APN; Joanna Ruiz, RN, BSN; Samantha DePadova, RN, BSN; Ellen Roberts, RN, BSN, OCN; Lucille B. Austria, MSN, MBA, RN, OCN Hackensack University Medical Center, Hackensack, New Jersey Background: Mucositis occurs in 15% to 40% of patients receiving chemotherapy or radiation therapy for cancer treatments.1 Patients and caregivers have dissatisfaction with the cancer treatment side effect of mucositis. Also, it has been shown that patients and caregivers are unaware of how to perform oral assessments and oral hygiene. Gaps in the literature suggest there is an inconsistency with oral assessments for mucositis, thus limiting the strength of the study findings and suggesting more research is needed to validate intervention outcome effectiveness. Objective: To develop a standardized patient education booklet for the identification of signs and symptoms of mucositis and of oral hygiene practices in cancer populations. Methods: This evidence-based practice (EBP) project will utilize the Johns Hopkins model for EBP methodology. Retrospective chart reviews will be conducted to identify the number of times education has been provided to the patient for signs and symptoms of mucositis and oral hygiene practices. An education plan will be developed to teach patients how to assess the mouth for mucositis and how to perform oral hygiene. The nurse navigator will be utilized to perform follow-up care and guide the patient along the care continuum including the survivorship phase. Subsequent chart reviews will be conducted to evaluate the outcomes. Results: The outcome of this project will be the development of a standard approach for clinical assessments by the nurse navigator for mucositis, and patient education for oral self-examinations and oral hygiene to recognize and limit the effects of mucositis through earlier recognition across cancer populations.

The current data from the pilot support the use of a standardized oral assessment tool that will be used to drive the nurse navigator assessments to manage patient symptoms of mucositis. In addition, patient education is being standardized for oral hygiene. Conclusions: Patients and caregivers will be able to demonstrate and articulate an oral assessment, signs and symptoms of mucositis, and oral hygiene practices. The nurse navigator role is intended to enhance cancer care for symptom management so that these assessment skills and oral hygiene practices will become part of the nurse navigator armament to aid the patient through the treatment process.

REFERENCE

1. Cawley MM, Benson LM. Current trends in managing oral mucositis. Clin J Oncol Nurs. 2005;9(5):584-591.

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CATEGORY I: Patient Education Role of the Advanced Practice Nurse Navigator in Phase 1 Clinical Trials Joyce Schaffer, MSN, RN, AOCNS; Gayle Jameson, MSN, ACNP-BC, AOCN; Lisa Robbins, BSN, RN, OCN; Melanie Brewer, DNSc, RN, FNP-BC Scottsdale Healthcare, Scottsdale, Arizona Background: Only 2% to 3% of adult cancer patients enroll in clinical trials (CTs). Multiple barriers are reported in the literature as reasons why patients do not participate in cancer drug development trials. One key factor is the lack of patient awareness and knowledge of the availability of treatment options through CTs. Participation in a CT is a frequently missed opportunity for patients to access new therapies that may not be suggested by the primary oncology team. In addition to the potential benefits for patients who participate in drug-development CTs, the significant contributions of CTs serve to advance the science and effectiveness of new cancer treatments. Patients may believe that CTs are only for end of life or have misconceptions about placebo-based studies and therefore choose not to pursue CTs. Objectives: Define the unique responsibilities and profound impact of the Advanced Practice Nurse Navigator (APNN) in phase 1 CTs. Methods: The APNN role is unique and vital in educating patients and the public regarding the availability of CT options and potential benefits. The APNN utilizes advanced assessment skills for early problem identification and intervention. Upon inquiry from patients and/or their family, basic information such as diagnosis, current treatment, and performance status are determined. Based on initial intake, additional discussion/education takes place regarding several issues, including optimal timing for consultation to discuss if and when CTs may be a treatment option; symptom management; nutritional status; and talking points to discuss with the primary oncologist.

Evidence-based resources, ie, NCCN guidelines, are provided to patients. When consulted, the APNN provides follow-up and ongoing contact and intervention for patients throughout their cancer journey from diagnosis to recovery. Results: At our institution, between the years 2007 and 2011, the APNN role contributed to the tripling of consultations (from 22% to 73% of all referred patients). Participation in CTs may enhance quality and quantity of life for enrolled patients. Patients are provided with evidence-based guidelines that outline both standard of care and CTs. The APNN guides and empowers patients through the maze of complexities in identifying appropriate CTs, availability, eligibility, and site location. Many patients who have exhausted standard-of-care options find hope in the new opportunities provided by CTs. Conclusions: The APNN plays a crucial role in phase 1 CTs by providing patients with accurate information and guidance. Navigating through study selection and enrollment is a tedious task that can be simplified by the services of the APNN. The APNN navigates patients through the multiple barriers that limit CT participation. This role has the potential to profoundly increase patient participation in CTs. Research is desperately needed to measure patient outcomes related to APNN intervention, including accrual to CTs and patient satisfaction.

Strength & Courage: Exercises for Breast Cancer Survivors DVD Sharon Cowden, MD; Janette Poppenberg, ACSM/ACS Magee-Womens Research Institute and Foundation, Pittsburgh, Pennsylvania Objectives: Medical research indicates that exercise for breast cancer survivors is safe and beneficial not only during recovery but also after treatment is completed. Aerobic exercise may even prevent the recurrence of breast cancer. Despite this research, few treatment programs provide adequate exercise information to survivors. A low-cost home exercise program specifically for breast cancer survivors is needed. We have created an exercise DVD for survivors that guides participants from postoperative rehabilitation to full recovery of upper body flexibility and strength. It also encourages routine aerobic exercise. Methods: Strength & Courage is a 75-minute DVD divided into 5 chapters. The introductory chapter features Dr Adam Brufsky, a breast cancer oncologist, discussing medical research supporting the importance of exercise to survivors. This is followed by 3 chapters leading the participant from postoperative stretching and postural exercises to advanced flexibility training and finally to modest weight training. The last chapter provides guidance for aerobic exercise. A special chapter was added highlighting the importance of exercise, especially modest weight training, for those with or at risk for lymphedema. All exercises are based on established research.

Results: Since 2008, approximately 15,000 DVDs have been distributed in all 50 states and 10 other countries. Limited surveys completed by DVD users show the exercises to be helpful in regaining upper body flexibility and strength. Three US medical centers are now conducting trials studying the feasibility of the exercises presented in the Strength & Courage DVD. Conclusions: To reach the existing population of more than 2.5 million breast cancer survivors in the United States alone—many in rural areas— a home exercise program that is clinically effective is needed. A home exercise DVD can be a beneficial tool in rehabilitation after breast cancer treatment. It can also help establish a lifetime exercise pattern. The extensive distribution of Strength & Courage, a nonprofit effort, demonstrates the compelling need for such a resource. Research trials currently under way may provide further support for the safety and efficacy of this program.

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CATEGORY II: Psychosocial Support Development of a Survivorship Celebration Benefits Cancer Survivors and Cancer Center Staff Kathleen Bryte, MSN, RN, OCN; Elizabeth Shumaker, MSN, RN The University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania Background: Recognizing the value of psychological support throughout cancer survivorship and implementing worthwhile programs to address psychosocial needs of cancer survivors are increasingly important considerations in the development of a cancer survivorship program. It is also vital that staff members who care for cancer survivors not only understand the importance of survivorship care but actively participate. In the process of establishing a comprehensive cancer survivorship program at the University of Pittsburgh Medical Center (UPMC) Cancer Center at UMPC Passavant, it was determined that a survivorship celebration would be a beneficial program for cancer survivors and for the staff as well.

Objective: The objective was to develop a celebration of survivorship that demonstrated support of survivors in ways other than the clinical aspects of their care: to celebrate their life. Multiple types of psychological support were anticipated for the event—learning coping strategies, sharing stories and experiences, and direct contact. Methods: A committee of 25 staff volunteers from the Cancer Center, with 2 registered nurse co-chairs, met monthly over 8 months to plan every facet of the event. Subcommittees were formed to handle larger aspects, such as making a survivorship DVD with cancer survivors and physicians to be shown at the event, with a copy given to each survivor, and construction of a 3-dimensional “Tree of Life” to which attendees could add a leaf with their name and message. A mailing was sent to all cancer patients seen in the Cancer Center (about 2000) inviting each of them and a guest to attend “A Celebration of Survivorship: Living in Full Bloom.” A national speaker/cancer survivor was the keynote presenter. Funds for the event were provided by grants, institutional support, and a fundraiser by the staff. Results: A total of 270 attended the event, including 40 staff members and 131 cancer survivors. Of the 2000 invitees, 5.4% (108) accepted the invitation; 95% (103) of invitees brought a guest, 18.5% (20) of whom were also cancer survivors. Follow-up evaluations by attendees and staff revealed overwhelmingly positive responses regarding psychological support. Conclusions: Not only did the cancer survivors and staff find support at the event, but there were also unexpected positive staff outcomes—the event planning meetings were dynamic with complete member involvement and the celebration served as an affirmation of the importance of why they do what they do. Thus, enhanced employee engagement became a secondary gain of the event. A celebration of survivorship will continue annually.

Perceived Survivorship Needs of Colorectal Cancer Survivors Lori McArdle, MSN, RN, OCN Highline Medical Center, Burien, Washington Background: The number of cancer survivors is estimated at 13.5 million1, and the American College of Surgeons (ACoS) requires cancer survivorship care plans that include details regarding patients’ disease and treatments.2 ACoS guidelines include aspects of the 4 components of cancer follow-up care: surveillance for recurrence, monitoring for and management of disease and treatment effects, detection of new cancers, and promotion of positive health behaviors. These components are within the physical domain of quality of life3 (QOL), leaving the psychological, social, and spiritual domains unaddressed. A gap exists between what is recommended as survivorship follow-up care and what survivors self-identify as necessary to continue survival and maintain QOL. Colorectal cancer survivors possess unique needs relating to body image and bowel function changes. Only by asking survivors themselves will we know the scope and extent of their needs. Objective: This study explored the perceived survivorship needs of adult colorectal cancer survivors to complete a cancer survivorship program. Methods: Using Ferrell’s 4 dimensions of QOL3 as a framework for cancer survivorship questions, participants completed 1 interview. With institutional review board approval and informed consent for this small, qualitative study, participant interviews were recorded, transcribed, and verified.

Data were coded, analyzed, and categorized into 10 topics as described by Stenginga et al.4 Colorectal cancer survivors revealed that a battle with cancer affected their lives negatively and positively. Needs in all 4 dimensions of QOL were identified. Survivors reported changing needs throughout survivorship, especially in education. Unique needs of colorectal cancer survivors were identified. All participants digressed from the interview questions to tell their cancer story. Conclusions: Survivorship care plans need to move beyond current guidelines and address the physical, psychological, social, and spiritual domains of QOL. Care plans should be 1 element of a comprehensive survivorship program that includes meeting the individual changing needs of survivors. Support groups and environments for survivors to interact with other survivors and healthcare professionals, counselors, and financial advisors should be established. Cancer survivors want and need a forum to tell their story.

REFERENCES

1. Cancer treatment & survivorship facts & figures. American Cancer Society Web site. http://www.cancer.org/Research/CancerFacts Figures/CancerTreatmentSurvivorshipFactsFigures. Accessed July 3, 2012.

2. Complying with 2012 ACoS COC Standards. Survivorship Forum. http://survivorshipforum.blogspot.com/2011/07/complying-with2012-acos-coc-standards.html. Accessed July 3, 2012.

3. Ferrell B. Quality of life cancer survivor model. http://prc.coh.org/pdf/cancer_survivor_QOL.pdf. Accessed February 19, 2009.

4. Stenginga SK, Lynch BM, Hawkes A, et al. Antecedents of domain-specific quality of life after colorectal cancer. Psychooncology.

2009;18(2):216-220.

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CATEGORY III: Tracking Processes Across the Continuum of Care Utilizing Patient Surveys to Drive Process Changes Within a High-Risk Genetic Clinic Nancy Bryan, RN, BSN; Sharon Gentry, RN, MSN, AOCN, CBCN Derrick L. Davis Forsyth Regional Cancer Center, Winston-Salem, North Carolina Background: High-risk breast cancer clients are encouraged to have a genetic consult and possible genetic testing to help guide current treatment decisions and provide information regarding personal and familial risk of cancer recurrence. Some clients may express initial interest in having a genetic consult but never return the family history questionnaire in order to proceed with the consultation process. Objectives: To attempt to understand why some clients do not use genetic consultation services. Information gained may serve as a guide to promote necessary change to the current consultation process and increase future consultation rates for the high-risk breast cancer patient population. Methods: A 6-item semistructured telephone survey was created based on a review of the literature focusing on factors that influence the decision to utilize genetic consultation services. Four survey items were dichotomous questions and 2 items were multiple choice questions. Survey questions explored the client’s perceived knowledge level and personal feelings surrounding the use of genetic testing and reasons for not returning the family history questionnaire. Participants were eligible if they had been sent a family history questionnaire between the months of January 2011 and April 2012 and had yet to return the questionnaire to the high-risk clinic coordinator. Results: Among 46 eligible participants, there was a 52% response rate. The majority of respondents (75%) felt that they had received enough information regarding their personal need for testing to make an informed decision and that the information gained from testing would be useful to them and their healthcare provider. Survey results indicated that 54% of respondents felt that “time constraints” was the primary reason for not returning the family history questionnaire and proceeding with the genetic consultation process. Other reasons included feeling that the test results would not affect treatment decisions (17%), unknown family history (17%), lack of adequate insurance coverage (13%), never received/misplaced questionnaire (13%), and personal hesitations (1%). Results from this survey correlate with previous findings from the literature. O’Neill and colleagues 1 found that there were no significant knowledge differences between those who declined testing and those who did not. Those who declined were more likely to report not having time, not wanting more testing, or already having enough knowledge related to cancer risk. Other reported reasons for failing to return family history questionnaires included decreased knowledge of family history, lack of adequate time, never having received a packet, being confused/overwhelmed, or forgetfulness. 2,3 Conclusions: Individual time constraints significantly contributed to the underutilization of genetic consultation services within the survey group. Personal time, or lack thereof, cannot be altered by the breast nurse navigator or the high-risk genetic clinic. The survey results did not produce evidence to support a change to the current genetic consultation process at this time.

REFERENCES

1. O’Neill S, Peters J, Vogel V, et al. Referral to cancer genetic counseling: are there stages of readiness? Am J Med Genet.

2006;142C(4):221-231.

2. Appleby-Tagoe J, Foulkes WD, Palma L. Reading between the lines: a comparison of responders and non-responders to a family history questionnaire and implications for cancer genetic counseling. J Genet Couns. 2012;21(2):273-291.

3. Armel SR, Hitchman K, Millar K, et al. The use of family history questionnaires: an examination of genetic risk estimates and genetic testing eligibility in the non-responder population. J Genet Couns. 2011;20(4):355-364.

Boston Medical Center Cancer Care Patient Navigation Program: Standardized Documentation in Patient Navigation at Boston Medical Center Katie A. Finn, PN; Sheldon Reeves, PN; Kathryn Ankner, PN; Taylor Teschner, PN; Adrienne Holding, RN; Robyn Souza, RN, MPH; Kathleen T. Finn, MSN, NP; Timothy Cooley, MD Boston Medical Center, Boston, Massachusetts Background: Boston Medical Center (BMC) is a private, not-for-profit academic medical center and the primary teaching affiliate for Boston University School of Medicine. It is a safety-net hospital, with approximately 65% of patients coming from neighborhoods with the highest levels of mortality and health disparities. With support from private grants and hospital funding, the patient navigation program was developed in 2005 in the Section of Hematology and Oncology. It now comprises 4 full-

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CATEGORY III: Tracking Processes Across the Continuum of Care time patient navigators (PNs), with over 400 patients currently enrolled. Methods: The patient navigation program uses a myriad of standardized and secure tools on a daily basis that aid in its success. In 2010, the PNs created the Patient Navigation Note in the electronic medical record. Developed with reporting capabilities in place, the Note is a valuable tool used to capture information such as barriers to care, time spent with a patient, demographic information, and documentation of resources utilized. Results: A monthly report generated by the Information Technology Department summarizes the data, providing valuable statistics and quality assurance. For example, the programâ&#x20AC;&#x2122;s most recent report showed a total of 1217 patients were entered into the patient navigation program between November 2011 and June 2012. Of those patients, 73% were of minority background, and 31% did not speak English. The most common barriers faced by these patients were transportation (25% of patients), followed by language (11% of patients). On average, the PN contacted each patient 4 times and spent approximately 47 hours a month either coordinating patient care or working directly with a patient. In addition to the significant amount of data the Note provides, it has also proven to be a useful communication tool between the PNs and the clinical team. The Patient Navigation Note is now utilized by PNs in different departments within the medical center, as well as affiliated Community Health Centers. The PNs developed a standardized operating procedure (SOP) with specific details on how to properly and uniformly use the Note. The SOP is used as a training tool for new staff and to ensure consistency in PN documentation. Reports generated from the notes are used to evaluate the programâ&#x20AC;&#x2122;s effectiveness, provide information to hospital administration, and support funding applications. Conclusion: Looking forward, the Patient Navigation Note will reveal the necessity of the PN role and the impact of the PN within the community.

Nurse Navigators Play Key Role in the Evolution of a Navigation Database: The Fox Chase Cancer Center Journey Bonnie Miller, RN, BSN, OCN, FAAMA; Tracey Newhall, RN, BS, OCN; Jessie Schol, RN, BSN, OCN; Caryn Vadseth, RN, BSN, CCRP; Joanne Stein, RN Fox Chase Cancer Center, Philadelphia, Pennsylvania Background: This program illustrates the impact of contributions by nurse navigators to the development of a database influencing cancer care across the continuum. Oncology nurse navigation continues to grow in importance as nurses assist with the diverse needs of cancer patients. Demonstrating the impact of nurse navigation along the continuum of care not only supports better outcomes but allows for sustainment of a navigation program. An effective tool to document and measure accurate and timely interventions that is not labor intensive is critical. Methods: A nurse navigation program piloted and tested several database programs starting with an Excel spreadsheet, which evolved to an ACCESS Database. Nurse navigators, nursing administration, and the IT research team developed a Web-based application. This application links existing systems within the institution, thus supporting clinical care. It also provides the ability to run reports allowing administrators to demonstrate the impact of navigation through the continuum of care and on the return on investment. All navigators utilize this application and actively participate in the continued upgrades and modifications meeting navigation program needs. Results: By instituting this application, time and effort spent by the nurse navigator in documentation has decreased. This allows navigators to focus on patient needs while permitting accurate, timely, and effective documentation. Data collected and reported have helped sustain nurse navigators in breast cancer programs and provided support for proposals for additional navigators in gynecologic oncology, head and neck cancer, thoracic cancer, gastrointestinal cancer, and infusion room settings. Conclusion: The database allows measurement of specific goals related to timeliness of patient care from initial call to first appointment and referral to clinical trials. The database assists with the evaluation of interdisciplinary metrics and goals across disease sites. The navigation database was developed by oncology nurse navigators to provide an avenue of documentation that is tailored to the needs of the oncology patient.

Oncology nursing practice includes patient education and advocacy. The evolution of the development of the navigation database demonstrates the impact that oncology nurses can have in creating a patient documentation tool while providing data that impact sustainability of this important role. Average retention rates across all disease sites is 68%. This information gleaned from the navigation database supports the nurse navigator role in our institution.

Information we are able to collect in the database demonstrates return on investment for patients touched by navigation and is reflected in retention rates, multidisciplinary care, clinical trial accruals, and streamlined timeliness of care.

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CATEGORY III: Tracking Processes Across the Continuum of Care Developing a Nurse Navigator Program at a National Cancer Instituteâ&#x20AC;&#x201C;Designated Comprehensive Cancer Center Maria Tucker, RN, OCN; Gail W. Davidson, RN, BSN, OCN; Kelly McDowell, CQE, SSGB; Kami Atiyeh, RN, BSN, OCN; Doris Garnett, RN, BSN, OCN; Lisa Graham, MSN, RN-BC; Ann Mangino, RN, BSN, OCN; Teresa Roblee, RN, OCN; Jocelyn Vaus, BS, RN The Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, Columbus, Ohio Background: Oncology nurse navigation continues to grow in importance as nurses assist with the diverse needs of the oncology patient population. In 2015 the American College of Surgeons Commission on Cancer will require a navigation program at all cancer centers to obtain accreditation. At the Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (The James), a 205-bed comprehensive cancer center located in the Midwest, navigation was explored reflecting the relationship-based care nursing model. Roles within The James provide aspects of the navigation function, without the full impact a designated role could demonstrate. Complex care needs within a diverse, multisite healthcare system require a concerted effort to coordinate care with best practice outcomes Objectives: To develop a nurse navigation program that will address barriers and identify available resources, improving timely access and ease across the continuum of care. Oncology patients deserve the opportunity to work with a navigator who has the education and expertise to coordinate their complicated care needs.

Methods: Utilizing the patient-centered relationship-based care model as a framework, a group of nurses functioning in a carecoordination role formed a work group and completed the following: literature review and conference attendance for knowledge; survey of patients, families, advisory groups for gaps in experience; local market and National Cancer Institute competitive assessment; review of tracking and outcome software. Results: The job description was drafted, a pilot study of the nurse navigator role was approved, and the first nurse navigator was put in place. Existing roles are currently being evaluated, actively identifying barriers, and the work group is systematically addressing these, as the role develops, to ensure the effective use of the navigator, allowing for the expansion of the program. Conclusions: Analysis of current care coordination demonstrates many resources are available, yet consistent implementation of access to care and services would add value to the organization. Education and reallocation of staff to meet new role expectations is being explored to maintain a budgetneutral program implementation. Software design is in process and a research study has been proposed to evaluate the effectiveness and outcomes of patient navigation. The successful implementation will include the designation of a disease management expert accessible to patients and providers to expand resources, increase patient compliance, and ease care burden.

CATEGORY IV: Original Research The Use of Patient and Provider Satisfaction as a Metric for the Effectiveness of the Oncology Nurse Navigator in an Academic Setting Joan Giblin, MSN, FNP-BC, AOCN; Heather Pinkerton, BSN, OCN; Nancy McCormick, BSN; Bonnie Josaphs, BSN, OCN; Hayley Kenslea, MHA Winship Cancer Institute of Emory University, Atlanta, Georgia Background: The role of the oncology nurse navigator (ONN) is expanding as the healthcare delivery system continues to change as it reacts to advances in cancer treatment and delivery, economic constraints, and increasing fragmentation that makes it difficult for consumers to navigate the healthcare system on their own. Metric studies looking at the role of the ONN have focused on timelines to treatment, but few have focused on patient and provider satisfaction as specific measures of the effectiveness of the ONN role and how it might impact patient perception of their healthcare delivery system. Objective: To test the utility of patient and provider satisfaction as one of the metrics for measuring the effectiveness of the role of the ONN in an academic setting. Methods: A total of 200 cancer patients who were identified by 3 ONNs as having received nurse navigation services over a 6-month period (August 2010-January 2011) were sent a letter and attached survey along with a self-addressed return envelope in February 2011. The survey consisted of 10 multiple choice questions and 5 short answer questions; patients were able to submit the survey anonymously. Returned surveys were mailed to an identified individual, and results were tabulated by a student from the Emory Business School. Thirty oncology providers (physicians, nurse practitioners, and/or physician assistants) who had the availability of ONNs in an academic-based clinic were surveyed from March through April 2012 uti-

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CATEGORY IV: Original Research lizing surveymonkey.com. The survey consisted of 10 multiple choice questions and 5 short answer questions; providers were able to submit the survey anonymously. Results were tabulated by a student from the Emory Business School. Results: Fifty-five responses were received from the 200 cancer patients contacted (26% rate of return). Individual ratings of agreement to statements about the care provided by the ONN with regard to knowledge, professionalism, information received, concern the ONN demonstrated, communication, emotional support, and an overall rating of the ONN program revealed a score greater than 90%. A surprising finding was that 67% of the patients agreed with the statement that the services of the ONN influenced their decision to obtain all of their cancer care at the academic medical setting. From the 30 oncology providers contacted, 29 survey responses were received (97% response rate). Statements about understanding the services provided to the patient by the ONN, the value of the ONN services to the practice, the timeliness of the coordination of patient care provided by the ONN, and the services of the ONN allowing the provider to offer a more comprehensive consult at the time of initial visit with the patient were all rated “strongly agree” by more than 60% of responders. Conclusions: Patient satisfaction scores are a feasible metric for measuring the effectiveness of an ONN program in an academic medical center. Greater than 90% of the patients gave the ONN program an overall rating. Of the providers surveyed, 72% “highly agreed” that they were satisfied with the services provided by the ONN; the majority of these providers (70%) worked with the breast and gastrointestinal navigators exclusively. The results of the 2 surveys, although separate, provided baseline metrics to monitor over time as we continue to grow the ONN program at this academic medical center. The survey demonstrated that patients rated the services of the ONN higher than did the providers.

Breast Nurse Navigator Role Impacts Timeliness of Care for Breast Cancer Patients Loril Garrett, BSN, RN, OCN, CBPN-IC, CBCN; Geralyn Roobol, RN, BS, LMSW, CMAC; Rebecca Segar, BSN-Student Spectrum Health, Grand Rapids, Michigan Background: Breast cancer care is delivered by multiple providers over an extended period of time within an already fragmented healthcare system, which has led to gaps in the care process. The breast nurse navigator (BNN) role seeks to address those gaps and improve patient outcomes. Research is needed to measure the effectiveness of the BNN role in improving patient outcomes. Objective: To evaluate the impact of the BNN role on the timeliness of care across the breast cancer treatment continuum for the breast cancer population served in our healthcare system. Methods: The BNN contacted patients within 2 weeks of their breast cancer diagnosis and offered ongoing support and guidance to them. The BNN performed a needs-based assessment with each interaction, which resulted in individualized interventions. Those interventions included providing education, emotional support, advocacy, and help with eliminating barriers to needed care. A retrospective study was conducted comparing breast cancer patients who received BNN services (fiscal year 2010) with those patients who received their care prior to the initiation of our BNN program (fiscal year 2009). Specific intervals were evaluated to assess timeliness of care for each time period; the number of days from breast cancer diagnosis (ductal carcinoma in situ or invasive breast cancer) to first treatment (surgery or chemotherapy), the number of days from surgery to the initiation of adjuvant treatment (chemotherapy, radiation, or antiestrogen therapy), and the number of days between more than 1 adjuvant therapy, as was applicable. Data were collected from the cancer registry, the Michigan Breast Oncology Quality Initiative database, nurse navigation worksheets, and the patients’ electronic medical records. Results: Timeliness of care from diagnosis to first treatment was improved by 17% overall (reduction of 6.3 days), by 19% for invasive breast cancers (reduction of 6.6 days), and by 29% for those needing neoadjuvant chemotherapy. The overall number of days to first adjuvant treatment was improved by 19% (reduction of 8 days).

Statistical analysis confirmed a significant reduction in the number of days from diagnosis to first treatment for patients receiving navigation (t[396] = -3.872, P <.001). Discussion: The role of navigator includes removing barriers to care, improving patient outcomes, and perfecting the overall quality of healthcare delivery.1 Breast cancer treatment and care can be improved by recognizing the value the nurse navigator role brings to the patient experience and enhancing that role.2 Conclusion: The role of BNN serves as a valuable resource for optimizing patient outcomes by significantly improving the timeliness of treatment and supportive care for breast cancer patients.

REFERENCES

1. Pedersen A, Hack TF. Pilots of oncology health care: a concept analysis of the patient navigator role. Oncol Nurs Forum. 2010;37(1):55-60.

2. Korber SF, Padula C, Gray J, et al. A breast navigator program: barriers, enhancers, and nursing interventions. Oncol Nurs Forum.

2011;38(1):44-50.

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CATEGORY IV: Original Research Patient Navigation: Blending Imaging and Oncology in Breast Cancer Jeannine Arias, RN, MSN, MBA, CBCN, CBPN-IC; Linda Wild, RN, CBPN-IC; Clarissa Moholick, MHSA Adventist Bolingbrook Hospital, Bolingbrook, Illinois Background: Patient navigation (PN) in cancer care refers to the individualized care provided to the breast cancer patients, families, and caregivers to ease multiple barriers and facilitate timely access to qualified medical and psychosocial care. The relatively new PN concept has become a healthcare buzzword as organizations strive to increase program efficiencies and system retention rates. Objectives: Our 4 objectives were to optimize a valued patient-tailored PN service program, efficiently grow our imaging/oncology volumes, integrate our service lines, and fulfill our cancer program standards. Methods: Our institution has regionalized our PN program within our 4 hospitals implementing the following 10 steps beginning at the imaging breast biopsy entry point. First we identify key stakeholders, patient groups, and current resources. Next we define the scope of the PN involvement, job description, necessary educational preparation, and expectations. We then identify and understand the current process. Also, we identify gaps, obstacles, and barriers to patients and families as well as track when patients fall out of the current system. We determine program scope, cost, and implementation strategy. Subsequently, we perform a needs assessment and develop a plan to bridge weaknesses in the current process. Furthermore, we develop a plan to address the weaknesses.

Next, we implement strategies accordingly. We then develop program outcome measures based on identified gaps and national quality-ofcare standards. Lastly, we evaluate. Results: Our results reveal breast cancer patients to need an individualized matrix continuum of interdisciplinary care. The cookie-cutter approach is ineffective. Immediate onset of PN and timely treatment and follow-up remain pivotal in patient satisfaction, outcome measures, retained volumes, quality improvements, and cost-effectiveness. Conclusions: Essentially the PN decreases denied insurance and hospitalizations by an average of 38% due to reduced treatment complications. In conclusion, PN continues to evolve as an influential component of breast cancer care.

CATEGORY V: Screening Programs for the Underserved Navigation-Enhanced Partnerships With Federally Qualified Health Centers (FQHCs) to Ensure Continuity of Care in a Mobile Screening Program Debra Resnick, MS; Andrea Tillman, BS; Linda Hammell; Cheryl Rusten, MPA Fox Chase Cancer Center, Cheltenham, Pennsylvania Background: Many underserved women in Philadelphia receive healthcare at 1 of 11 FQHC Community Health Centers (CHCs). The Fox Chase Cancer Center (FCCC) mobile screening program sought partnerships with CHCs to address mutual goals of mammography and follow-up services for underserved and high-risk women. Objective: Provide regular mammography screening and coordinated community navigation to improve access to follow-up care for eligible women from CHCs. Methods: The Community Navigator (CN) set up regular, recurring screening dates at 3 CHCs. CHC staff selected and scheduled women for each date and ensured that required paperwork and prior films were available. Following protocol, results were provided by FCCC Diagnostic Imaging to women and their CHC doctors within 10 days. The staff also called women with abnormal results (BI-RADS 0) to make a follow-up appointment. Confirmed appointments were communicated to the CN, who then contacted each woman to assist with overcoming barriers to follow-up. Barriers such as language, transportation, and/or insurance were addressed. For patients with language barriers, the CN arranged with the CHC for translators. Funds were made available to assist with transportation issues, and the CN assessed insurance eligibility and advised Patient Financial Services to code women as uninsured as needed so they could receive services (and no bills). The CN also served as liaison between the CHC and the FCCC mammography department to ensure that women returning for follow-up had prescriptions and that communication between FCCC and the CHC regarding results was smooth. Results: In 2011, there were 11 screenings held at 3 CHCs. Of 277 women screened, 209 (75%) were uninsured; 36 had abnormal results; and 27 returned to FCCC for follow-up services, including 27 diagnostic mammograms, 21 ultrasounds, 3 needle aspirations, 5 core biopsies, and 1 excisional biopsy. Most of the 27 women who received mammograms were contacted by the CN; 15 uninsured women utilized navigation services. The CN facilitated translation by an FCCC translator for 1 woman and translation and transportation assistance by the CHC for 3 others. Two women with behavioral health concerns were escorted while they were at FCCC. Conclusions: The partnerships between FCCC and the CHCs have proved mutually beneficial. In addition to meeting a shared commitment to provide underserved and high-risk women with breast cancer screening and follow-up, the partnerships provide FCCCâ&#x20AC;&#x2122;s mobile screening program with stable and efficient screening dates and the CHC with an effective way to meet and track its screening goals for women aged 40 years and older. In addition to facilitating regular screenings, the CN has been critical to ensuring that women needing follow-up services can get them at FCCC, if desired, by helping them overcome barriers such as language and transportation. It is likely some of the women who came back would not have done so without help. Together FCCC and the CHCs are ensuring breast health continuity of care.

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CATEGORY V: Screening Programs for the Underserved Innovative Research-Based Educational Tools/Resources to Improve the Breast Cancer Screening Experience for Women With Disabilities Linda Muraca, RN, MN1; M. Bianca Seaton, MSc, PhD(c)1; Mary Agnes Beduz, RN, MN, PhD1; Julie Devaney, MA1; Jan Angus, RN, MN, PhD2; Nancy Barry, BA3; Samira Chandani4, Laura McDonald, BASc5; Fran Odette, MSW6 1

Mount Sinai Hospital; 2Faculty of Nursing, University of Toronto; 3Centre for Independent Living; 4Cancer Support Network; Toronto Central LIHN; 6Springtide Resources. All, Toronto, Canada.

5

Background: Women with disabilities (WWD) have the same biological risk of developing breast cancer as nondisabled women but are less likely to participate in regular cancer screening. A previous community-based needs assessment conducted by our research team in Ontario, Canada, consented 24 WWD in 4 urban- and 1 suburban-situated focus groups to learn about their experiences with facilitators and barriers to cancer screening. The WWD shared stories of dehumanizing experiences with healthcare providers (HPs), stressing that negative encounters were powerful deterrents to a return screening. A key recommendation from the WWD was to provide best-practice educational opportunities for HPs about how to create enabling screening environments. Methods: Our research team subsequently conducted focus groups with 43 mammography technologists, radiologists, and reception staff from 3 academic teaching hospitals in Ontario, Canada, to learn about their attitudes, experiences, and learning needs when working with WWD. Data were analyzed using qualitative content analysis. The focus group participants demonstrated a strong desire to provide a positive screening experience for all patients but had a tendency to respond to novel or unusual care situations involving WWD with social awkwardness or confused inaction. These findings underscore the need for greater disability awareness among HPs working in cancer screening. Results: Merging the results of the 2 focus group studies with HPs and WWD, our team has developed creative, evidence-based educational tools and resources about how to create enabling screening environments. First, we developed an immersive learning program for HPs using standardized patients trained to role-play breast imaging scenarios. This highly effective method of education with breast imaging staff from the 3 teaching hospitals was successful in positively shifting intention to change behaviors with WWD, and participant satisfaction was very high. Subsequently, we developed e-learning modules, an educational film, tip sheets for WWD and HPs, and an accessible Web-based facilitation manual for use at other screening centers. Conclusion: These educational tools and resources enable other screening centers to train their staff about respectful communication with WWD and improve future screening attendance.

The research results from our 2 studies as well as these innovative tools and resources will be shared in this presentation.

Prostate REACH, Navigating Men to Prostate Health Jerilyn Baskett, MS Fox Chase Cancer Center, Philadelphia, Pennsylvania Background: The Prostate Risk Assessment Program (PRAP) at Fox Chase Cancer Center is a longitudinal screening and research program that provides screening and risk-reducing options to men at high risk for prostate cancer (PCa). Prostate REACH (Risk, Education, and Assessment in the Community with Help) was developed to increase PRAP access by African American men, who have the highest risk compared with other races, but who experience barriers to participation. Key features of prostate REACH include community screening using a mobile van, a small pool of subsidy funds, and a patient navigator (PN) to provide assistance with recruitment and enrollment issues. Prior studies have shown that African American men tend to distrust medical programs not provided by African American physicians but may be more willing to participate if contact is maintained with a community outreach worker. Objective: Increase participation in PRAP by a diverse group of African American men. Methods: The PN engaged partner churches and an African Americanâ&#x20AC;&#x201C;oriented radio station as screening sites. She supplemented PRAP recruitment efforts with REACH radio ads and flyers disseminated at churches. Interested men called the PRAP office and if eligible were scheduled for an appointment. Uninsured men were referred to Patient Financial Services and asked if contact by the PN was acceptable. Upon consent, contact information was forwarded to the PN, who called each man to assist with insurance and/or other issues related to enrollment. As needed, she maintained contact through the entire process from enrollment through screening and follow-up. PN interactions were captured in an Excel spreadsheet. The PN attended every screening event, at which she obtained written consent and administered a satisfaction survey. Results: Prostate REACH prompted 53 phone calls, and 49 men scheduled appointments. Of those, 25 came for screening over 13 screening dates. Nine men had abnormal screenings resulting in 2 biopsies and 1 diagnosed case. Seventy-five percent of men used navigation and were contacted on average twice by the PN. The most common barrier to participation was lack of insurance (83%).

Men with abnormal findings required more extensive navigation including help with obtaining public insurance and free medications. In 1 case, the PN was instrumental in getting VA benefits reinstated so surgery could be covered. Over 75% of men found the community setting important in their decision to be screened, and 69% were extremely satisfied with navigation services. Conclusions: Black men are at high risk for developing prostate cancer, and new strategies are needed to increase awareness, informed decision making, and possible participation in screening as well as research. One strategy is to bring PCa risk assessment programs directly into high-risk communities. However, implementing such programs is not easy and presents a range of challenges. Navigation services appear to be key to making this effort work.

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CATEGORY VI: Community Outreach The Development of Navigation Tools to Assess Medical and Social Barriers to Care Laura Beaupre, RN, BSN, OCN, CBPN-IC Lehigh Valley Health Network, Allentown, Pennsylvania Background: The role of the registered nurse patient navigator at Lehigh Valley Health Network (LVHN) is to educate and support people diagnosed with cancer through the continuum of care. The care provided by the navigator begins at diagnosis and continues through to survivorship. At LVHN, we recognized a need for a comprehensive program whereby the navigator would identify the patient’s medical and social needs early in the treatment course and chart the barriers to care as well as interventions in a central database accessible by the entire care team. Methods: The development of a comprehensive navigation role at LVHN began with the creation of navigation tools. The templates and completed forms have all been incorporated into our electronic medical record, MOSAIQ. Our tools include the Nurse Navigator Patient Interview and Barrier Identification form, the Tumor Board Pre-conference Presentation worksheet, and the Navigation Data Base. By using the Patient Interview template during the first encounter with the newly diagnosed patient, the navigator can identify barriers to care and make necessary consults to resolve them. By using the Pre-conference Presentation worksheet, the navigator can present a multifaceted overview of the patient’s medical and social history and needs at the Multidisciplinary Tumor Board. By using a central database, the care team has a single place to access the information. Results: This poster will showcase the tools described above and the data that have been collected regarding 4 specific barriers to care as well as the steps taken by the navigator to help overcome these barriers. Of the 102 patients identified with barriers to care, 6 patients with a language barrier were referred to our bilingual navigators and social worker for their care. Eleven patients had transportation issues and were referred to our social worker, who helped set up volunteer drivers through the American Cancer Society and a local program called “Wheel Time.” Twenty-four patients who were either underinsured or uninsured were referred to our financial counselors for help, and 28 patients with social or personal issues were referred to our Cancer Support Team for counseling or to our Smoking Cessation program.

Meeting the Needs of Adult and Childhood Cancer Survivors Throughout the Lifespan: Norton Cancer Institute Survivorship Program, a National Cancer Institute Community Cancer Centers Program Christy Roberts, RN, BSN, OCN Norton Cancer Institute, Louisville, Kentucky Background: In response to the Institute of Medicine report in 2005, “From Cancer Patient to Cancer Survivor: Lost in Transition,” the Norton Cancer Institute call to action was to develop a Survivorship program dedicated to cancer patients who had completed active therapy. Dr Sheron Williams, a medical oncologist, started the program in 2006. In 2010, Norton Cancer Institute was chosen as a National Cancer Institute Community Cancer Centers Program facility. A nurse navigator, Christy Roberts, RN, BSN, OCN, joined in 2011 to help increase awareness in the community, assist in patient education, and institute the Survivorship Care Plans for all program patients. In October 2011, a specialty clinic was opened for the adult survivors of childhood cancer. The program now has a population of adult and childhood cancer survivors who come to the clinic for follow-up on an annual basis or more frequently if the patient’s condition warrants. All patients who are seen in the program have a Survivorship Care Plan, developed and tailored to the patient and his or her needs, that includes a complete summary of cancer treatment, current progress note, screening guidelines, and recommendations for further surveillance. The program started out seeing almost 60 patients in the first year. Currently the program has over 500 patients and is growing daily. Methods: The Norton Cancer Institute engages in a multidisciplinary approach that includes not only physician and nursing visits but also participation by specialists in nutrition, genetics, lymphedema, behavioral oncology, cancer resources, and other disciplines as needed. The Survivorship program is geared to meeting the patient’s complex medical, psychosocial, and spiritual needs, which are often present in cancer survivors. In 2012, the program was awarded a grant from Komen for the Cure to conduct outreach to the uninsured and underinsured breast cancer population. There is overwhelming evidence that further research is needed in the area of cancer survivorship, and the Norton Survivorship program is positioned for involvement with research projects to help address the needs of long-term survivors. Results: Community Outreach is ongoing throughout the state, and the program is an active participant in the Kentucky Cancer Consortium. Christy Roberts, RN, BSN, OCN, is a member of the Smoke Free Kentucky initiative. The program works in conjunction with the Norton Healthcare Prevention program for ongoing education about cancer survivorship to the community. Conclusions: A poster will be presented to detail the timeline of the Survivorship program from the beginning to present, with information on how to build a Survivorship program to address the needs of cancer survivors. The poster will also present the many initiatives that the program participates in throughout the community, statewide, and nationally with the National Cancer Institute Community Cancer Centers Program.

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NAVIGATION PRINCIPLES ACROSS THE CONTINUUM

By Sharon Gentry, RN, MSN, AOCN, CBCN Derrick L. Davis Forsyth Regional Cancer Center

A

s the growing scope and importance of patient navigation evolves, core principles remain at the heart of each program.

Dr Harold Freeman has identified and practiced these principles over the last 20 years.1 • Patient navigation is a patient-centric healthcare service delivery model.

• Patient navigation serves to integrate a fragmented healthcare system for the individual patient.

• The core function of patient navigation is the elimination of barriers to timely care across all segments of the healthcare system.

• Patient navigation should be defined with a clear scope that distinguishes the role and responsibilities of the navigator from those of all other providers.

• Delivery of patient navigation services should be cost-effective and commensurate with the training and skills necessary to navigate an individual through a particular phase of the care continuum.

• Who should navigate should be determined by the level of the skills required at a given phase of navigation.

• Within a system, there are defined points at which navigation begins and ends.

• There is a need to navigate patients across disconnected systems of care.

• Patient navigation systems require coordination.

Sharon Gentry, RN, MSN, AOCN, CBCN

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A case study involving 2 friends will reflect these principles and other aspects of patient navigation.

AJ is a 46-year-old female with a diagnosis of invasive breast cancer. Her family history of cancer led her surgeon to schedule her for genetic counseling in a neighboring healthcare system because the service was not available in her community. During the genetic counseling session with the patient and her husband, the counselor discovered that the couple did not have a clear

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understanding of her disease or options for care.

The counselor contacted the breast nurse navigator to meet with AJ after the genetic session. AJ relayed to the navigator that a unilateral mastectomy was planned due to tumor size, chemotherapy might be offered after surgery, and reconstructive surgery was not mentioned by the surgeon.

After reviewing the estrogen receptor–negative, progesterone receptor–negative and HER2-negative pathology report of a 2.8-cm tumor and talking with the couple, the navigator realized that the patient had not been given access to other breast care team members for help with preoperative decisions. Her system did not offer a plastic surgeon consultation or access to neoadjuvant clinical trials. AJ and her husband were offered referrals to a medical oncologist, a plastic surgeon, and a radiation oncologist and were given an explanation of each team member’s role. Due to the length of the consultative sessions, the navigator recognized the need for AJ and her husband to go home and think about the referrals. A follow-up phone call the next day led to a visit with a medical oncologist, where AJ enrolled in a neoadjuvant clinical trial and went on to a successful completion of breast cancer care. The breast nurse navigator continued contact until completion of treatment and bridged AJ to survivorship care.

Two years later, the breast nurse navigator gets a call from AJ concerning a friend, MT, who has a nonpalpable suspicious area on her mammogram. MT has been advised to have an excisional biopsy by a surgeon. She is terrified of the idea of being put to sleep and is concerned financially about the cost of surgery and missing work. The navigator contacts MT and assesses her needs.

MT’s breast imaging center does not employ a breast navigator, and she did not want to return there to talk with a radiologist. She is offered a second opinion for interpretation of her mammograms at an outside facility and accepts the opportunity.

After meeting with a radiologist who reviewed

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her films, hearing an explanation of a stereotactic biopsy, and seeing the procedure room, a biopsy was performed; the results showed benign pathology.

Throughout the 2 scenarios, the patient was the focus of care delivery—a patient-centric healthcare service delivery model. AJ entered for a single genetic consultation and ended up in a complex arena of referrals and consults that were outside her known community of care. She faced decisions, examinations, a varied team of caregivers, and travel to another system for care. MT met the same challenges but brought a strong emotion of fear about anesthesia and financial considerations. The journey for each patient does begin in her own neighborhood, and it is essential for the navigator to understand the culture and to share special concerns with the healthcare team. AJ and MT were assessed to see if it was financially feasible to travel outside their neighborhood. Each was able to commute to a new community for care. To support the concept of patient-focused care, each patient could be envisioned in Engel’s biopsychosocial model with her health needs in the center and psychological, sociological, and biological needs encompassing and surrounding her concept of health.2 AJ was young, with concerning tumor biologics that needed to be addressed by appropriate team members for informed care choices. Travel had to be evaluated, and coping with a cancer diagnosis was a priority. Fear of suggested treatment could have been the psychological factor to drive MT away from care, but a friend who had experienced personalized care created a bridge for her to travel where the fear could be addressed with an alternate treatment. Again, travel could have been an influence in care, and the different opinions on her diagnostic findings could have contributed to mistrust in the healthcare system. The goal of navigation is not to compete among healthcare systems but to meet the needs of the patient with personal and accessible healthcare services.

Each healthcare system brings fragmented pieces of care, whether it is in physical layout, internal design, political cultures, or other complexities.

Patient navigation provides personalized assistance for patients to journey through their care and allows a virtual integration that appears seamless to the traveler.3 AJ was in the treatment phase of the care continuum4—the world of stag-

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ing radiologists, medical oncologists, surgeons, plastic surgeons, radiation oncologists, genetic consultants—each in their own physical part of a healthcare system. The navigator was the consistent face and voice throughout the maze of appointments, procedures, tests, and treatments.

MT was in the early detection or outreach part of the care continuum—diagnostic mammograms, ultrasound, and breast biopsies. Two care fragments arose for the breast nurse navigator—the breast diagnostic center was in a different part of the community, and the system’s starting point of breast navigation was defined at diagnosis of breast cancer—and there was no navigation counterpart in the outreach care component.

Korber and colleagues5 identified the critical role of navigators possessing information and educa-

The goal of navigation is not to compete among healthcare systems but to meet the needs of the patient with personal and accessible healthcare services. tion about the entire breast cancer process. This is critical whether it is gastrointestinal, thoracic, urologic, or any other cancer nurse navigation program. Where do patients enter the care continuum and what do they experience at each phase of care? It may not be the specific job role, but to be a guiding force for patients, knowledge and connections to the entire care continuum add to the virtual seamlessness of the care. A call to the diagnostic center with an explanation on specific patient needs opened the door for MT to get care. Honesty about not being physically present was explained to MT, and having access to the breast nurse navigator by phone was provided. Meeting her at the facility was an option but not needed in this case. Communication among the team members is critical for the system to appear nonfragmented. When the diagnostic staff was made aware of MT’s fears, she was allowed to see where the biopsy would take place and which technician would be with her. Follow-up phone calls by the breast nurse navigator after the procedure and after the negative results were shared by the radiologist enhanced this seamless care.

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The principle of defining where navigation begins and where it ends brings clearer definition to the role. Calhoun and colleagues6 pointed out that training requires a described role, responsibilities, and core competencies. The genetic counselor recognized the necessity for the breast nurse navigator when a need for education on breast cancer was recognized. The starting point of navigation beginning at diagnosis and ending after treatment allows others in the system to understand where the role of navigation fits into the continuum. If it had been for educational resources only, the lay navigator in the cancer center resource room would have been appropriate. This clarification separates the navigator from the surgical nurse, chemotherapy nurse, research nurse, and bedside or clinical nurse and allows performance measures to be developed for the navigator role.

When AJ was connected to the research nurse during the medical oncology consultation, she was prepared for this by a prior conversation with the breast nurse navigator. Studies have shown that navigation can increase clinical trial participation.7 A social worker was not needed but would have addressed travel or finance barriers. The nurse navigator used a dietitian as part of AJ’s care for triple-negative survivorship.8

Studies have shown that navigation can increase clinical trial participation.

The defined scope of practice is another principle—it distinguishes the navigator from that of all other providers. Patient navigation focusing on a specific health condition uses a discrete set of health services. Nurse navigator defines a professional that has clinical knowledge, is aware of community resources, and is trained for nursing assessment.9 The navigator nurse does not diagnose or go beyond the professional boundaries of her state licensure. Korber and colleagues5 received feedback from navigated patients that role definition and a description were areas for improvement in navigation. In MT’s case, she was connected to a nurse who had been trained in the continuum of breast care in a discrete healthcare system. Although clinical assessment was made and resources were offered, an ideal scenario would have been for an outreach nurse navigator to be a contact at the breast diagnostic center.

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The variations on patient navigation are reflected in the principle of using the correct skills of a navigator in the care continuum. The idea is to find the skill set that is needed in a specific healthcare system. The nurse has been described above. A volunteer can connect patients to information and community resources.9 A lay navigator or survivor navigator can connect patients to information but lacks medical knowledge outside of his or her own experience and is restricted in ability to provide clinical information and interventions.10 A social worker can address psychosocial barriers, counsel and address community resources, but is restricted in medical knowledge and ability to address treatment and symptom concerns.11 Freeman and Rodriguez advise that navigators should not be assigned to duties that do not require their level of skill.1 It is common to see nurse navigators scheduling appointments, which could be handled by a clerical staff member to free the nurse for education and assessing support needs. It is important to empower the patients to arrange their appointments, with the critical piece being the information the nurse navigator provides the scheduler. The concept of patient empowerment in navigation has been defined by Fillion and colleagues12 to include active coping, self-management, and social support. For example, MT was worried about work issues, so she was connected to a scheduler to arrange follow-up at her discretion. The scheduler was aware of MT’s fear and financial needs, so this information could be passed on to the team at the diagnostic center.

The nurse navigator followed up to assure an appointment had been set. MT was taking action to manage her health concerns and used AJ as social support to access care. If the nurse navigator had discovered in follow-up that MT had not scheduled an appointment, an assessment of “why not?” would have been completed.

This leads to the highlight of navigation—the principle of eliminating barriers to care across the segments of healthcare. “Timely care” is defined by the patient, and for some it cannot be fast enough after they hear the word cancer. Statistics can be gathered for the demographics on who does not come for early detection, follow up for care after a cancer diagnosis, or complete planned care, but the true answers are collected in a oneon-one conversation between a healthcare provider and a patient. The navigator has that

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relationship with the patient. Barriers in navigation have been identified as financial/economic, language or cultural, communication, systemic, transportation, or fear.13 The nurse navigator recognized AJ’s barriers as lack of full treatment option education, possible transportation or travel, and fear of a different system of care. MT had possible travel and financial issues. The navigator addressed each with the patients as part of their decision-making process.

Cost-effectiveness and the feasibility of training someone to navigate a particular phase of care is a consideration each healthcare system contemplates when looking at the concept of patient navigation. At this time nurse practitioners in the role can charge for select services but there is no insurance reimbursement for patient navigation completed by a nurse, social worker, or other healthcare team member. A volunteer is the cheapest route, as they can direct patients to resources in the community. Lay navigators can do the same with a small cost to the system.

Nurses are more expensive but can show cost rewards with patients being more educated that leads to less clinical time, recapturing the outmigrated patient, and increasing the number of individuals using screening services. Patient navigation has been associated with cost-effectiveness.14 But what about cost savings to the bigger picture of healthcare spending? When the nurse navigator heard MT’s concern over an excisional biopsy in the operating room, a concept of cost to the patient was a concern. The nurse realized the surgical route was more expensive to the patient in terms of dollars and time. MT also had an emotional cost due to her fear of anesthesia. The NCCN guidelines15 state the core needle biopsy is preferred over excisional biopsy unless larger tissue samples are needed and the excisional biopsy has been deleted under diagnostic mammogram follow-up. The American Society of Breast Surgeons also states the core needle biopsy as the preferred invasive diagnostic procedure for nonpalpable breast imaging lesions.16 A stereo biopsy with clip placement is estimated at $1,972.00, and a 2011 hospital visit for an excisional breast biopsy is approximately $4200.00 (Cannon, Evans, personal communication, December 2011). Even adding the 100-mile roundtrip of gas cost as an out-of-pocket expense to the patient, the core biopsy is still more economical. MT’s cost savings was her emotional

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peace of mind. She referred to AJ as a friend and a blessing to connect her to such individualized care and sent a personal thank you to the radiologist who took the time to explain the procedure and show her the room during her consultative visit.

Cost to the system–a satisfied customer who will share her pleasant experience with others.

There is a need to navigate patients across disconnected systems, and this can be within 1 system or, as in this case study, to a neighboring system that offers other treatment options. In this case, the navigator was the connection to care.

AJ was allowed entry when barriers in the original system were recognized (no plastic surgery, no clinical trials), and MT networked with a friend to overcome the barriers she was faced within her care. This concept can be applied to entire states.

If navigation resources were documented on a statewide basis, communication among care systems could be enhanced, especially if a patient had to move during treatment.17

Barriers in navigation have been identified as financial/economic, language or cultural, communication, systemic, transportation, or fear.

Each principle ties in directly with the principle of coordination. A champion oversees navigation activity in a given healthcare system. This person can see the system of navigation that is carried out by the healthcare team, including individual navigators. Most barriers can be overcome by navigators and other healthcare team members, but some consistently insurmountable ones are directed to the primary coordinator so they can be addressed with other departments of the system. Communication is key in a complex healthcare system, and the coordinator is the voice for the navigation process and navigators.

The nurse navigator commended the genetic counselor for recognizing AJ’s need and involving navigation on that fateful visit, and her success story was made known to the coordinator. Also, the nurse navigator thanked the director of diagnostic imaging and her staff for being receptive to MT’s concerns, and this too was known to the coordinator.

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

33

CLINICAL PRACTICE

Navigation has a “ripple effect,” or as Webster defines it, “a spreading, pervasive, and usually unintentional effect or influence.”18 in the healthcare system and out among the survivors of the system of care. As patient navigation evolves as a strategy to improve outcomes in cancer and other diseases by removing barriers to diagnosis and treatment, the process and the navigators will cause ripple effects in patient care. The effects will be positive as confidence is gained to access care and patients are empow-

As patient navigation evolves as a strategy to improve outcomes in cancer and other diseases by removing barriers to diagnosis and treatment, the process and the navigators will cause ripple effects in patient care. ered to move through the healthcare system.

Survivors often want to “give back” by volunteering in a capacity of reaching out to other patients as they journey through the care continuum…thus spreading influence. AJ’s positive experience with navigation in 1 system opened a pathway of care for MT. A nurse navigator in a system of navigation was a common thread among the 2 patients and created a seamless journey for their care. g

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3. Patient Navigation in Cancer Care Web site. What is Patient Navigation? www.patientnavigation.com. Accessed January 28, 2012.

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2010;11:205-215.

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13. Freeman HP. Voices of a Broken System: Real People, Real Problems. President’s Cancer Panel: Report of the Chairman 20002001. Reuben SH, ed. Bethesda, MD: National Institutes of Health, National Cancer Institute; 2002.

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15. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Breast Cancer Screening and Diagnosis. Version 1.2011. www.nccn.org/professionals/physi cian_gls/pdf/breast-screening.pdf. Accessed May 28, 2012.

16. The American Society of Breast Surgeons. Position statement on concordance assessment of image-guided breast biopsies and management of borderline or high-risk lesions. www.breastsurgeons.org/statements/PDF_Statements/Concord ance_Assessment.pdf. Accessed May 30, 2012.

17. Academy of Oncology Nurse Navigators. Rocks and Silver Linings. April 2, 2010 http://www.aonnonline.org/blog/rocksand-silver-linings. Accessed June 2, 2012.

18. Merriam-Webster. www.merriam-webster.com/dictionary/ ripple%20effect. Accessed May 28, 2012.

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