December VOL 3, NO 6 by The Oncology Nurse

DECEMBER 2012

www.AONNonline.org

VOL 3, NO 6

Highlights from the

Third Annual Navigation and Survivorship Conference Highlights Include: • Preconference Workshops • Building Community Outreach • Best Practices in Rehabilitation • Financial and Legal Issues for Cancer Patients • Breast Reconstruction • Navigation and Personalized Medicine • Site-Specific Navigation • Keynote Spotlights

Also in this issue: Clinical Survivorship Guidelines: What Navigators Need to Know By Katherine Sharpe, MTS Mandi Pratt-Chapman, MA

NAVIGATING PATIENTS ACROSS THE CONTINUUM OF CANCER CARE

The median age of patients in the VISTAâ&#x20AC; trial was 71 years (range: 48-91).

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 [HR=0.695; 95% CI, 0.57-0.85; p<0.05]; 60.1-month median follow-up†)

Approved for subcutaneous and IV administration‡ VELCADE® (bortezomib) Indication and Important Safety Information INDICATION VELCADE (bortezomib) is indicated for the treatment of patients with multiple myeloma.

CONTRAINDICATIONS VELCADE is contraindicated in patients with hypersensitivity (not including local reactions) to bortezomib, boron, or mannitol, including anaphylactic reactions. VELCADE is contraindicated for intrathecal administration.

WARNINGS, PRECAUTIONS, AND DRUG INTERACTIONS Peripheral neuropathy: Manage with dose modification or discontinuation. Patients with preexisting severe neuropathy should be treated with VELCADE only after careful risk-benefit assessment. ▼ Hypotension: Use caution when treating patients taking antihypertensives, with a history of syncope, or with dehydration. ▼ Cardiac toxicity: Worsening of and development of cardiac failure have occurred. Closely monitor patients with existing heart disease or risk factors for heart disease. ▼ Pulmonary toxicity: Acute respiratory syndromes have occurred. Monitor closely for new or worsening symptoms. ▼ Posterior reversible encephalopathy syndrome: Consider MRI imaging for onset of visual or neurological symptoms; discontinue VELCADE if suspected. ▼ Gastrointestinal toxicity: Nausea, diarrhea, constipation, and vomiting may require use of antiemetic and antidiarrheal medications or fluid replacement. ▼ Thrombocytopenia or Neutropenia: Monitor complete blood counts regularly throughout treatment. ▼

Tumor lysis syndrome: Closely monitor patients with high tumor burden. ▼ Hepatic toxicity: Monitor hepatic enzymes during treatment. ▼ Embryo-fetal risk: Women should avoid becoming pregnant while being treated with VELCADE. Advise pregnant women of potential embryo-fetal harm. ▼ Closely monitor patients receiving VELCADE in combination with strong CYP3A4 inhibitors. Avoid concomitant use of strong CYP3A4 inducers. ▼

ADVERSE REACTIONS Most commonly reported adverse reactions (incidence ≥20%) in clinical studies include nausea, diarrhea, thrombocytopenia, neutropenia, peripheral neuropathy, fatigue, neuralgia, anemia, leukopenia, constipation, vomiting, lymphopenia, rash, pyrexia, and anorexia. Please see Brief Summary for VELCADE on next page. *Melphalan+prednisone. †

VISTA: a randomized, open-label, international phase 3 trial (N=682) evaluating the efficacy and safety of VELCADE administered intravenously in combination with MP vs MP in previously untreated multiple myeloma (MM). The primary endpoint was TTP. Secondary endpoints were CR, ORR, PFS, and overall survival. At a prespecified interim analysis (median follow-up 16.3 months), VELCADE+MP resulted in significantly superior results for TTP (median 20.7 months with VELCADE+MP vs 15.0 months with MP [p =0.000002]), PFS, overall survival, and ORR. Further enrollment was halted and patients receiving MP were offered VELCADE in addition. Updated analyses were performed. ‡ The reconstituted concentration for subcutaneous administration (2.5 mg/mL) is greater than the reconstituted concentration for IV administration (1 mg/mL).

Living Proof

Brief Summary INDICATIONS: VELCADE® (bortezomib) for Injection is indicated for the treatment of patients with multiple myeloma. VELCADE for Injection is indicated for the treatment of patients with mantle cell lymphoma who have received at least 1 prior therapy. CONTRAINDICATIONS: VELCADE is contraindicated in patients with hypersensitivity (not including local reactions) to bortezomib, boron, or mannitol, including anaphylactic reactions. VELCADE is contraindicated for intrathecal administration. WARNINGS AND PRECAUTIONS: 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 39% for intravenous. Grade ≥3 peripheral neuropathy occurred in 6% of patients in the subcutaneous treatment group, compared with 15% 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 require a decrease in the dose and/or a less dose-intense schedule. In the VELCADE vs dexamethasone phase 3 relapsed multiple myeloma study, improvement in or resolution of peripheral neuropathy was reported in 48% of patients with ≥Grade 2 peripheral neuropathy following dose adjustment or interruption. 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 8%. 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 Toxicity: Acute development or exacerbation of congestive heart failure and new onset of decreased left ventricular ejection fraction have occurred during VELCADE therapy, 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-related cardiac disorder was 8% and 5% in the VELCADE and dexamethasone groups, respectively. The incidence of adverse reactions suggestive of heart failure (acute pulmonary edema, pulmonary edema, cardiac failure, congestive cardiac failure, cardiogenic shock) was ≤1% for each individual reaction in the VELCADE group. In the dexamethasone group, the incidence was ≤1% for cardiac failure and congestive cardiac failure; there were no reported reactions of acute pulmonary edema, pulmonary edema, or cardiogenic shock. There have been isolated cases of QT-interval prolongation in clinical studies; causality has not been established. Pulmonary Toxicity: Acute Respiratory Distress Syndrome (ARDS) and acute diffuse infiltrative pulmonary disease of unknown etiology, such as pneumonitis, interstitial pneumonia, and lung infiltration have occurred 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, consider interrupting VELCADE until a prompt, comprehensive, diagnostic evaluation is conducted. Posterior Reversible Encephalopathy Syndrome (PRES): Posterior Reversible Encephalopathy Syndrome (PRES; formerly termed Reversible Posterior Leukoencephalopathy Syndrome (RPLS)) has occurred in patients receiving VELCADE. PRES 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 PRES, discontinue VELCADE. The safety of reinitiating VELCADE therapy in patients previously experiencing PRES is not known. Gastrointestinal Toxicity: 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. Interrupt VELCADE for severe symptoms. 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 bleeding (≥Grade 3) was 2% on the VELCADE arm and <1% on the dexamethasone arm. Complete blood counts (CBC) should be monitored frequently during treatment with VELCADE. Platelet counts should be monitored prior to each dose of VELCADE. Patients experiencing thrombocytopenia may require change in the dose and schedule of VELCADE. Gastrointestinal and intracerebral hemorrhage has been reported in association with VELCADE. Transfusions may be considered. Tumor Lysis Syndrome: Tumor lysis syndrome has been reported with VELCADE therapy. Patients at risk of tumor lysis syndrome are those with high tumor burden prior to treatment. Monitor patients closely and take appropriate precautions. Hepatic Toxicity: Cases of acute liver failure have been reported in patients receiving multiple concomitant medications and with serious underlying medical conditions. Other reported hepatic reactions include hepatitis, increases in liver enzymes, and hyperbilirubinemia. Interrupt VELCADE therapy to assess reversibility. There is limited re-challenge information in these patients.

Embryo-fetal: Pregnancy Category D. Women of reproductive 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 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) 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 (≥10%) adverse reactions were nausea (49%), diarrhea NOS (46%), fatigue (41%), peripheral neuropathies NEC (38%), thrombocytopenia (32%), vomiting NOS (28%), constipation (25%), pyrexia (21%), anorexia (20%), anemia NOS (18%), headache NOS (15%), neutropenia (15%), rash NOS (13%), paresthesia (13%), dizziness (excl vertigo 11%), and weakness (11%). Eleven percent (11%) of patients experienced at least 1 episode of ≥Grade 4 toxicity, most commonly thrombocytopenia (4%) and neutropenia (2%). A total of 26% of patients experienced a serious adverse reaction during the studies. The most commonly reported serious adverse reactions included diarrhea, vomiting, and pyrexia (3% each), nausea, dehydration, and thrombocytopenia (2% each), and pneumonia, dyspnea, peripheral neuropathies NEC, and herpes zoster (1% each). 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 reactions in this study (VELCADE+melphalan/prednisone vs melphalan/prednisone) were thrombocytopenia (48% vs 42%), neutropenia (47% vs 42%), peripheral neuropathy (46% vs 1%), nausea (39% vs 21%), diarrhea (35% vs 6%), neuralgia (34% vs <1%), anemia (32% vs 46%), leukopenia (32% vs 28%), vomiting (26% vs 12%), fatigue (25% vs 14%), lymphopenia (23% vs 15%), constipation (23% vs 4%), anorexia (19% vs 6%), asthenia (16% vs 7%), pyrexia (16% vs 6%), paresthesia (12% vs 1%), herpes zoster (11% vs 3%), rash (11% vs 2%), abdominal pain upper (10% vs 6%), and insomnia (10% vs 6%). 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 reactions in this study were peripheral neuropathy NEC (37% vs 50%), thrombocytopenia (30% vs 34%), neutropenia (23% vs 27%), neuralgia (23% vs 23%), anemia (19% vs 23%), diarrhea (19% vs 28%), leukopenia (18% vs 20%), nausea (16% vs 14%), pyrexia (12% vs 8%), vomiting (9% vs 11%), asthenia (7% vs 16%), and fatigue (7% vs 15%). The incidence of serious adverse reactions was similar for the subcutaneous treatment group (20%) and the intravenous treatment group (19%). The most commonly reported SARs were pneumonia and pyrexia (2% each) in the subcutaneous treatment group and pneumonia, diarrhea, and peripheral sensory neuropathy (3% each) 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. Monitor patients for signs of bortezomib toxicity and consider a bortezomib dose reduction if bortezomib must be given in combination with strong CYP3A4 inhibitors (eg, 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

V-12-0273

12/12

LETTERS FROM LILLIE

Editor-in-Chief Dear Reader,

s we close out 2012, it is a time to reflect back over the year and smile regarding the accomplishments of the Academy of Oncology Nurse Navigators (AONN). Among them was an incredible third annual AONN conference in Phoenix. I am proud to say that I continue to receive e-mails from attendees about what Lillie D. Shockney, RN, BS, MAS they learned and the empowerment they felt when they returned home to implement their new knowledge. If you were unable to join us, you can view the presentations via the virtual conference on our Web site at www.aonnonline.org. Looking forward, we hope you will join us for the fourth annual conference, November 15-17, 2013, at The Peabody Hotel in Memphis, Tennessee. Membership in AONN continues to grow, which gives me personal joy! I hope that eventually every person who serves in a navigation role for cancer patients becomes a part of this professional organization. Also of value to AONN members is the Journal of Oncology Navigation & Survivorship (JONS), the official publication of AONN. 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 navigators in cancer care by serving as a platform for these professionals to disseminate original research findings, exchange best practices, and find support in their growing community. To submit an original research paper to JONS, please visit www.aonnonline.org. Currently, we are expanding and crystallizing the roles and expectations of our Leadership Council as well as developing more ways for members to connect with one another. Watch for information in the coming months regarding webinar series on topics you have recommended and the establishment of virtual interest groups that will enable you to network electronically via the AONN Web site. Whether it be connecting with others who navigate the same organ-site patient population or working in a specific area of navigation and/or survivorship (such as community outreach, surgical care, chemotherapy, or long-term survivorship follow-up care), we want to optimize ways for you to reach one another with ease and efficiency. We want to remove any barriers you are experiencing that prevent you from being the best navigator you can be for your patients! We continue to work closely with various established partners, and we are also creating new partnerships that can offer additional resources to aid you in your navigation work. For example, our partner, Health Monitor Network, publisher of Living with Cancer, has created FREE personal Web sites for all AONN members, including you! Your individual Web site makes it easy for you to give your patients trusted patient education information, savings tips, and tools. Your basic Web site is already done and, in just a few minutes, you can easily enhance your free and secure site at www.HealthMonitor.com/ AONN/welcome.html. I encourage you to see this amazing benefit of AONN membership for yourself. Have a wonderful holiday with family and friends, and return refreshed in the new year ready to help your oncology patients benefit from all the wonderful good you do on their behalf. g With kind regards,

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

Lillie D. Shockney, RN, BS, MAS University Distinguished Service Assoc Prof of Breast Cancer, Depts of Surgery & Oncology; Admin Director: Johns Hopkins Breast Clinical Programs; Johns Hopkins Cancer Survivorship Programs; Assoc Prof, JHU School of Medicine, Depts of Surgery & Gynecology and Obstetrics; Assoc Prof, JHU School of Nursing shockli@jhmi.ed

Section Editors Breast Cancer Sharon Gentry, RN, MSN, AOCN, CBCN Breast Health Navigator Forsyth Regional Cancer Center

Cancer Rehabilitation & Survivorship Julie Silver, MD Assistant Professor Harvard Medical School

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 Asst VP, Office of Health Communications and Health Disparities Asst Prof Cancer Prevention and 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

Thoracic Oncology Pamela Matten, RN, BSN, OCN St. Joseph Hospital, Orange, CA

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 Program

Penny Widmaier, RN, MSN Nurse Navigator Botsford Cancer Center

MISSION STATEMENT

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

PUBLISHING STAFF SENIOR VICE PRESIDENT, SALES & MARKETING

Philip Pawelko phil@greenhillhc.com PUBLISHER

John W. Hennessy john@greenhillhc.com DIRECTOR, CLIENT SERVICES

Eric Iannaccone eric@greenhillhc.com EDITORIAL DIRECTOR

Kristin Siyahian kristin@greenhillhc.com EDITORIAL ASSISTANT

Jennifer Brandt SENIOR COPY EDITOR

Rosemary Hansen PRODUCTION MANAGER

Stephanie Laudien QUALITY CONTROL DIRECTOR

Barbara Marino

TABLE OF CONTENTS

DECEMBER 2012 • VOL 3, NO 6

AONN CONFERENCE HIGHLIGHTS

Preconference Workshops

Navigation and Survivorship General Sessions

Keynote Session

Navigation in the Age of Personalized Medicine

Best Practices in Addressing Health Inequities

Awards

Breakout Sessions: Summaries and Take-Home Messages

Practice Setting–Specific Panel Discussion

BUSINESS MANAGER

Blanche Marchitto CIRCULATION DEPARTMENT

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.

DECEMBER 2012 • VOLUME 3, ISSUE 6

GUIDELINES

Clinical Survivorship Guidelines: What Navigators Need to Know By Katherine Sharpe, MTS Mandi Pratt-Chapman, MA

AONNONLINE.ORG

Tumor Invasion and Metastasis Co-Chairpersons: Zena Werb and Bruce R. Zetter January 20-23, 2013 • San Diego, CA Ninth AACR-Japanese Cancer Association Joint Conference: Breakthroughs in Basic and Translational Cancer Research Co-Chairpersons: Tyler Jacks and Kohei Miyazono February 21-25, 2013 • Maui, HI Joint AACR-Society of Nuclear Medicine and Molecular Imaging Conference: State-of-the-Art Molecular Imaging in Cancer Biology and Therapy Co-Chairpersons: Carolyn J. Anderson and David Piwnica-Worms February 27-March 2, 2013 • San Diego, CA AACR Annual Meeting 2013 Chairperson: José Baselga April 6-10, 2013 • Washington, DC Synthetic Lethal Approaches to Cancer Vulnerabilities Co-Chairpersons: William C. Hahn, Sebastian Nijman, and Louis M. Staudt May 17-20, 2013 • Bellevue, WA Chromatin and Epigenetics in Cancer Co-Chairpersons: Suzanne J. Baker, Charles W.M. Roberts, and Gerald R. Crabtree June 19-22, 2013 • Atlanta, GA Frontiers in Basic Cancer Research Chairperson: Scott W. Lowe Co-Chairpersons: Joan S. Brugge, Hans Clevers, Carol L. Prives, and Davide Ruggero September 18-22, 2013 • National Harbor, MD

Advances in Ovarian Cancer Research: From Concept to Clinic Co-Chairpersons: David G. Huntsman, Douglas A. Levine, and Sandra Orsulic September 18-21, 2013 • Miami, FL Advances in Breast Cancer Research Co-Chairpersons: Carlos L. Arteaga, Jeffrey M. Rosen, Jane E. Visvader, and Douglas Yee October 3-6, 2013 • San Diego, CA AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics Co-Chairpersons: Jeffrey A. Engelman, James H. Doroshow, and Sabine Tejpar October 19-23, 2013 • Boston, MA Twelfth Annual International Conference on Frontiers in Cancer Prevention Research Chairperson: Paul J. Limburg October 27-30, 2013 • National Harbor, MD Pediatric Cancer at the Crossroads: Translating Discovery into Improved Outcomes Co-Chairpersons: John M. Maris, Stella M. Davies, James R. Downing, Lee J. Helman, and Michael B. Kastan November 3-6, 2013 • San Diego, CA The Translational Impact of Model Organisms in Cancer Co-Chairpersons: Cory Abate-Shen, A. Thomas Look, and Terry A. Van Dyke November 5-8, 2013 • San Diego, CA CTRC-AACR San Antonio Breast Cancer Symposium Co-Directors: Carlos L. Arteaga, C. Kent Osborne, and Peter M. Ravdin December 10-14, 2013 • San Antonio, TX

AACR EDUCATIONAL WORKSHOPS Accelerating Anticancer Agent Development and Validation Co-Chairpersons: H. Kim Lyerly and Richard Pazdur May 8-10, 2013 Bethesda, MD

NEW! Integrative Molecular Cancer Epidemiology Director: Thomas A. Sellers; Co-Directors: Peter L. Kraft and Margaret R. Spitz July 15-20, 2013 Boston, MA

Molecular Biology in Clinical Oncology Co-Directors: William G. Kaelin Jr., Mark Geraci, and Suzanne Topalian July 21-28, 2013 Snowmass, CO

ASCO/AACR Methods in Clinical Cancer Research Co-Directors: Jamie H. von Roenn, Neal J. Meropol, and Mithat Gönen July 27-August 2, 2013 Vail, CO

Translational Research for Basic Scientists Co-Directors: Tom Curran, George D. Demetri, and Pasi A. Jänne Fall 2013 Boston, MA

www.aacr.org/Workshops2013

AONN CONFERENCE PROCEEDINGS

Highlights From the Third Annual Navigation and Survivorship Conference By Lynne Lederman, PhD

ver 400 oncology navigators discussed the advancement of their profession and availed themselves of educational and networking opportunities at the Third Annual Navigation and Survivorship Conference held in Phoenix, Arizona, September 14-16, 2012. This conference, the official national meeting of the Academy of Oncology Nurse Navigators (AONN), has

including sessions for administrators and sessions on survivorship. The conference also addressed the challenges of program improvement; the role of personalized medicine; and ways to implement best practices in navigation, survivorship, and psychosocial care. Continuing education credits were available for registered nurses and for social workers. As cochairs for this year’s conference, Sharon Gentry, RN, MSN, AOCN, CBCN, Derrick L. Davis Forsyth Regional This is my third conference, and each one Cancer Center, Winston-Salem, North gets better. This year had more of what we Carolina, and Lillie D. Shockney, RN, BS, MAS, Johns Hopkins University, want to know. Baltimore, Maryland, welcomed the attendees, introduced each day’s sessions, moder—Frances “Ann” Mihalik, BS, OCN, BMT, STAR, ated discussions, presented at one of the Bon Secours, St. Francis Health System, Greenville, South Carolina general sessions, and concluded the conference. Ms Shockney is also the inaugural been increasing in size and scope since its inception. The director for the program. conference enables navigators to connect with one The Fourth Annual Navigation and Survivorship another about best practices and discover how other parConference will be held November 15-17, 2013, in ticipants established navigation programs at their instituMemphis, Tennessee. In-depth coverage of the material pretions. New to this year’s conference were more tracks, sented here is also available at www.AONNonline.org. g

“

”

DECEMBER 2012 • VOLUME 3, ISSUE 6

AONNONLINE.ORG

AONN CONFERENCE PROCEEDINGS

PRECONFERENCE WORKSHOPS Participants were able to attend several preconference workshops

Core Principles of Navigation Nicole Messier, RN, BSN Clinical Program Coordinator, Vermont Cancer Center, Fletcher Allen Health Care, Burlington, Vermont Pamela J. Vlahakis, RN, MSN, CBCN Clinical Care Coordinator, Hunterdon Regional Breast Care Program, Hunterdon Regional Cancer Center, Flemington, New Jersey

Nicole Messier, RN, BSN

he session leaders defined patient navigation in accord with the National Cancer Instituteâ&#x20AC;&#x2122;s 2005 definition, discussed the 9 core principles of patient navigation, and identified barriers all navigators face when providing care. The speakers also explored the relevance of navigation principles in the context of 2 case studies illustrating issues in their practice settings. Ms Vlahakis began as a navigator for patients with breast cancer and now works with patients with any type of cancer at her community medical center, whereas Ms Messier navigates patients with upper gastrointestinal cancers in an academic setting.

The core function of patient navigation is the elimination of barriers to timely care across all segments of the healthcare continuum. The principles of navigation are: 1. Patient navigation is a patient-centric healthcare service delivery model. 2. Patient navigation serves to virtually integrate a fragmented healthcare system for the individual patient. 3. The core function of patient navigation is the elimination of barriers to timely care across all segments of the healthcare continuum. 4. Delivery of patient navigation services should be costeffective and commensurate with the training and skills necessary to navigate an individual through a particular phase of the care continuum. 5. The determination of who should navigate should be determined by the level of skills required at a given phase of navigation.

AONNONLINE.ORG

6. In a given system of care there is the need to define the point at which navigation begins and the point at which navigation ends. 7. There is a need to navigate patients across disconnected systems of care, such as primary care sites and tertiary care sites. 8. Patient navigation systems require coordination. 9. Patient navigation should be defined with a clear scope of practice that distinguishes the role and responsibilities of the navigator from that of all other providers. In concluding, Ms Messier described the key points for patient navigation: the staff of each program must revisit and redefine patient navigation specific to their institution and culture; all disease sites are now studied for the benefits navigation provides; and navigation research must continue to document measurable outcomes. g

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

AONN CONFERENCE PROCEEDINGS

Getting Excited About Research Case Examples Linda Fleisher, PhD, MPH Assistant Vice President, Health Communications and Health Disparities; Assistant Professor, Cancer Prevention and Control, Fox Chase Cancer Center, Philadelphia, Pennsylvania Elaine Sein, RN, BSN, OCN, CBCN Senior Project Manager, Fox Chase Cancer Center Partners Program, Philadelphia, Pennsylvania Linda Fleisher, PhD, MPH

his session presented the types of research and evaluation projects, grant proposals, and publishing opportunities available for patient navigators. Navigation programs provide the opportunity to develop evaluation measures—these should be defined so that specific changes in the target patient population can be determined in a specific time frame with clearly defined and realistic objectives. As an example, an objective could be to offer patient

These principles were discussed in the context of collecting data on and evaluation of navigation programs as well as research related to patient navigation. navigation services to a given percentage of patients with lung cancer during the next fiscal year. This includes a time frame, criterion, target population, and action. Good proposals should include the following types of objectives: • Process—daily tasks, activities, work plans, eg, obtaining materials and distributing them • Impact—what has happened at the end of the program, eg, behavior change not a change in morbidity or mortality

• Outcome—long-term changes, eg, smoking cessation or decrease in incidence of lung cancer Various research designs, types of research methods and evidence, and nonresearch evidence were reviewed. These principles were discussed in the context of collecting data on and evaluation of navigation programs as well as research related to patient navigation. Case examples from Fox Chase Cancer Center Partners Program were presented. Note that a poster from this program won in its category at the meeting. Planning for grant proposals, the essential components of a grant, and grant writing tips were presented, and resources were listed, including the Oncology Nursing Society, American Cancer Society, National Institutes of Health, and the National Cancer Institute. The speakers recommended ways to prepare for publishing, including starting small, and knowing the publication and its requirements. Journals that have published navigation research include the following: • Journal of Oncology Navigation & Survivorship • Clinical Journal of Oncology Nursing • Oncology Nursing Forum • Oncology • Cancer AONN also provides publishing opportunities such as blogging, short articles on navigation programs, and abstracts at this meeting. g

Implementing a Survivorship Program/Clinic Cynthia Waddington, RN, MSN, AOCN Helen F. Graham Cancer Center, Christiana Care Health System, Newark, Delaware

s Waddington discussed survivorship trends, various recommendations and model survivorship programs, and options for survivorship care plans. She noted that the phases of survival include an acute phase during diagnosis and treatment planning, an extended period during the course of treatment, and a permanent

DECEMBER 2012 • VOLUME 3, ISSUE 6

phase equated with “cure.” Patients may experience changes in relationships, work experience, physical limitations, late effects of the disease, and fear of recurrence. During survivorship, patients may be cancer free or in a maintained remission, both of which can be considered extended survivorship, or be in a chronic survivorship dur-

AONNONLINE.ORG

AONN CONFERENCE PROCEEDINGS

ing which they are living with cancer. Patients have unmet needs outside of their disease treatment, including feeling lost when active treatment ends. An Institute of Medicine report states that the essential components of survivorship care should include prevention, surveillance, intervention, and coordination of care. Goals of survivorship treatment should be a central strategy for transition into survivorship to be used by the patient and the primary care provider, including diagnosis, treatment, follow-up care plan, and guidelines to meet the needs of the survivor. This should optimize opportunities for health promotion and management of persistent and delayed effects of the cancer and its treatment. The plan should specify providers responsible for this care and include resources and referrals. Each institution may provide different levels of survivorship care, which may depend on available staff and funding. These include: 1. Level One: treatment summary and survivor care plan 2. Level Two: add education and support services 3. Level Three: add counseling, late/long-term care 4. Level Four: add survivorship subspecialty care (cardiology, fertility, sexual health, etc)

Staff is the largest single cost of survivorship care. Some costs may be offset for healthcare providers if they can bill under “history of cancer.” Coverage for other services may or may not exist, eg, nutrition or smoking cessation. Group education may be a way to control some of these costs, and Waddington, RN, MSN, the program may be justified if it Cynthia AOCN refers to other services, eg, occupational or physical therapy. There are many survivorship plans available online for those who don’t want to create their own. Ms Waddington described the specifics of the program at her institution, noting that not all physicians want to turn over survivorship care to someone else. Patients prefer faceto-face delivery of the transition plan at the end of treatment from their oncologist. Elements of a program should include quality of life; dealing with aftereffects of treatment, such as fatigue; and managing the fear of recurrence. As the population ages, the population of cancer survivors will continue to grow, as will the need for survivorship care plans. g

Panel Discussion: Building Optimal Community Outreach— Lay and Community Jean B. Sellers, RN, MSN (Moderator) Administrative Clinical Directory, UNC Lineberger Comprehensive Cancer Program, Chapel Hill, North Carolina Leah Leilani Beck, BS Patient Navigator, The Center for Cancer Prevention and Treatment, St. Joseph Hospital, Orange, California Jessica Denton, MSW Patient Navigator, Social Worker, American Cancer Society, Williston, Vermont

hree models of navigation—academic, community based, and lay—were discussed by Ms Sellers. Ms Beck discussed the special needs of Pacific Islanders involving colorectal cancer education, screening, and navigation. She also showed how a standard cancer care continuum road map could be modified to an ideal road map in light of her institution’s clinical–community partnership by including cultural sensitivity, identification and provision of resources, education, families, and support groups. Ms Denton defined patient navigation from a social work perspective and discussed the American Cancer Society Community and Hospital Partnership program. g

AONNONLINE.ORG

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

AONN CONFERENCE PROCEEDINGS

Administering a Navigation Program Bonnie Miller, RN, BSN, OCN, FAAMA Administrative Director, Women’s Cancer Center, Clinical Nurse Navigation, Fox Chase Cancer Center, Philadelphia, Pennsylvania Elizabeth Whitley, PhD, RN Principal Investigator, Colorado Patient Navigator Training Program, Denver, Colorado Bonnie Miller, RN, BSN, OCN, FAAMA

lizabeth Whitley, PhD, RN, who presented “Leading and Administering a Patient Navigation Program” with Bonnie Miller, RN, BSN, OCN, FAAMA, reminded participants that patient navigators are not necessarily nurses but can include other health personnel. Ms Miller pointed out that successful implementation of a program required buy-in, clearly defined roles, and evaluations of performance. Dr Whitley described the navigators in her system, which includes laypersons, paraprofessionals, allied health professionals, and unlicensed health professionals from other countries. Their role is to eliminate health disparities by identifying and reducing barriers to healthcare for vulnerable and underserved populations. She focused on her system, in which navigators are involved with communitybased screening and navigation to care, eg, barbershop programs, and which includes screening for cardiovascular issues, glucose, and cholesterol, not just cancer. She described 6 essential elements for patient navigator success:

It is important to document the value of navigators and their impact on patient care by tracking volumes...and by quantifying return on investment.... 1. Evidence-based clinical guidelines, eg, US Preventive Services Task Force guides 2. Registries for specific populations/electronic medical records (EMRs) to identify candidates for screening 3. Standard work, ie, job descriptions and clear roles 4. Patient navigator training and orientation centered on knowledge and skills, competency-based performance measures 5. Avoid scope creep; provide supervision and support 6. Robust evaluation, which is included in the program budget Dr Whitley thinks there is a need for more clinical and

DECEMBER 2012 • VOLUME 3, ISSUE 6

financial efficacy data concerning cancer navigation. Ms Miller discussed the development and implementation of navigation services at her institution. Requirements for successful implementation noted by Ms Miller include buy-in, clearly defined structure and roles, ability to evaluate and willingness to share outcomes, and ensuring sustainability of the program. Navigation has to be integrated into the cancer care continuum. It is important to document the value of navigators and their impact on patient care by tracking volumes, outcome, and quality, and by quantifying return on investment, eg, by demonstrating patient retention within the system. Ms Miller also discussed having navigators walk through or map the patient flow and experience as a way of identifying gaps in care or care coordination. In her institution it took 2 days to map the experience with everyone who would interact with patients including doctors, nurse practitioners, surgeons, etc. She showed navigation statistics, which included retention rates, and listed the many navigation measures being collected at her center. They know from patient surveys that some patients have chosen Fox Chase because they have navigators.g

AONNONLINE.ORG

AONN CONFERENCE PROCEEDINGS

How Do Case Managers and Navigators Interface? Nancy Skinner, RN-BC, CCM Principal Consultant, Riverside HealthCare, Whitwell, Tennessee

s Skinner contrasted the AONN with the Case Management Society of America (CMSA), including a description of the organizations and how they define the roles of their members. She currently believes that transitional and community-based care is often disorganized and haphazard, with patients shuffled from one postacute environment or provider to another with little advocacy and no established transitional care plan—and absolutely no idea that it should not be that way. Patients are moving from one episode of care to another without a champion to coordinate that care. This prompts a downward trajectory of their health status that can not only prompt readmissions to an acute care facility but also cause physical, emotional, and financial compromise that may interfere with the quality of the patient’s life. Patients are confused, families are in crisis, and the intervention by case managers and navigators, including members of AONN and CMSA, may be the one action that decreases anxiety and prevents negative outcomes. Ms Skinner pointed out that the Affordable Care Act will have an effect on the practice of navigation and case management and should improve the quality and efficiency

of care. She described care coordination standards and points of transition of care, which can Nancy Skinner, RN-BC, CCM occur within or between settings as well as across health states, eg, curative to palliative care. Each transition provides an opportunity for care coordination and a point of accountability. She empha-

...intervention by case managers and navigators, including members of AONN and CMSA, may be the one action that decreases anxiety.... sized that patients have to take a greater role in coordinating their care instead of assuming someone else is in charge. She also discussed the significant problem of nonadherence to medication and suggested ways of approaching it, which involve patient education and active participation. g

THIRD ANNUAL CONFERENCE

Influencing the Patient-Impact Factor

May 2-5, 2013 Westin Diplomat • Hollywood, Florida

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

AONN CONFERENCE PROCEEDINGS

GENERAL SESSIONS Navigation Update 2012: Current Regulations— Navigation and Survivorship Care Plan Linda W. Ferris, BA, MA, PhD Chair, Accreditation Committee, Commission on Cancer, Lakewood, Colorado

r Ferris presented an overview of the American College of Surgeons Commission on Cancer (CoC), which represents 50 professional organizations with a goal to improve quality of life and outcomes. She spoke about the new CoC standards “ensuring high quality patient-centered care.” Other quality programs of the American College of Surgeons include the National Accreditation Program for Breast Centers, the Bariatric Surgery Center Network Accreditation Program, the National Surgical Quality Improvement Program (NSQIP), and the Trauma Verification Program. New initiatives of the CoC include new standards ensuring patient-centered care and improved resources for cancer programs. Dr Ferris noted that programs have to be specific to each institution and the patient populations they serve. In developing a needs assessment, she suggested going for the “biggest bang for the buck” considering who are the stakeholders and who will benefit the most, using data from cancer registries. Among the new standards that will be phased in by 2015 are patient navigation, psychosocial distress screening, and survivorship care plans. She gave an example of a needs assessment to evaluate the cancer care experience, the patient navigation process, and an overall rating of care received, noting it should target patients with early stage cancer, not just those with stage III or IV cancer. Compliance with the standard will require annual reporting including the following: • Identified healthcare disparities and/or barriers addressed by the navigation process • Description of established navigation process • Identification of community served (who and how many) • Documentation of activities and metrics • Options for future directions such as quality improvement and enhancements Dr Ferris also described suggestions for implementing a successful navigation program, noting that CoC resources are available for assistance. These include the CoC Answer Forum and Best Practices Repository, which are available

Linda W. Ferris, BA, MA, PhD

DECEMBER 2012 • VOLUME 3, ISSUE 6

online. She discussed why survivorship plans are needed, as well as the minimum requirements for a survivorship plan as outlined in the Institute of Medicine report, From Cancer Patient to Cancer Survivor: Lost in Transition. She said one issue that she is grappling with is when to give survivorship plans to patients. One factor is considering when patients are cognitively ready to receive their plan. Sample survivorship care plans, which Dr Ferris described, are available online: • www.journeyforward.org • www.nursingcenter.com/library/static.asp?pageid= 721732 • www.cancer.net/patient/survivorship • www.livestrongcareplan.org She noted that the Journey Forward is from the patient perspective whereas the American Society of Clinical Oncology (ASCO) plan at cancer.net is very medically oriented. Other resources are available from the Institute of Medicine and various medical centers and online cancerrelated communities. Another issue is how to have survivorship plans integrated with the EMRs. Dr Ferris also discussed how compliance with the new standards for survivorship plans will need to be documented, then briefly discussed healthcare reform. Ms Shockney commented that there will be a shortage of primary care physicians. Because patients become attached to their cancer care team, there will be a need to set expectations up front, get patient buy-in on the treatment plan, and depending on diagnosis and treatment, they can expect either to be transitioned back to their primary care physician or other care providers. Both the oncologist and the patient need to let go. She said the primary care physician should continue to be responsible for patient basic health maintenance care, eg, flu shots, and she never wants patients to disconnect while under the oncologist’s care for their cancer. The survivorship care plan is an opportunity to prepare the patient for engagement and self-management. Underserved and nonadherent patients tend to hold on longer. Dr Ferris agreed that patients in active care should maintain communication with primary care physicians, who should be part of the team managing the patient’s health. g

AONNONLINE.ORG

AONN CONFERENCE PROCEEDINGS

Best Practices in Survivorship Care Rehabilitation Julie Silver, MD Assistant Professor, Department of Physical Medicine and Rehabilitation, Harvard Medical School, Boston, Massachusetts

r Silver is a rehabilitation physician and observed that cancer rehabilitation research is outpacing all other fields of rehabilitation research. She defined the following terms: • Impairment: what is seen on a physical exam, eg, injured muscle or nerves • Disability: what the patient can’t do because of the impairment • Handicap: societal and other prejudices that come along with disability Dr Silver spoke about rehab and a little about “prehab.” She noted that unlike survivorship care, which may not be covered by insurance, cancer rehab is reimbursable (like that for a stroke or accident). According to CoC guidelines, accreditation requires offering cancer rehab services right now (not in 2015), and there are national mandates for offering real cancer rehab services. It is not acceptable to tell survivors to accept more pain and disability than they have to. Their insurance has to cover these rehab services. Survivors are vocal and will mention where they are being treated and how they feel about not being offered rehab. They are not happy to accept disability as the “new normal.” Rehab is not a posttreatment service, it is medical treatment. In a study of patients with breast cancer, physical performance and activity level are the only 2 things that correlate with quality of life in these patients. Rehab includes occupational therapy, physical therapy, physiatry, and speech/language therapy, and all of these are reimbursable if performed by trained, licensed, and/or board certified professionals. Exercise classes are important but are not “real” rehab. She presented case studies to illustrate the use of rehab in patient care. She also made the point that palliative care is not the same as rehab. She presented evidence that 60% to 95% of patients should be referred for cancer rehab based on the presence of impairments. Although rehab may not remove impairments, it will be associated with improvements. Although most patients with breast cancer may have lymphedema, it is not their only problem. Other problems that rehab should address include chemotherapy-induced

AONNONLINE.ORG

peripheral neuropathy, cancerrelated fatigue, chemo brain, Julie Silver, MD and cognitive impairment. Dr Silver recommended keeping the future of accountable care in mind. Accountable care means standardized training, implementing protocols, then tracking outcomes. Prehabilitation is the precursor to rehabilitation and includes evaluations and interventions that are designed to obtain a baseline status and improve pain or functional limitations prior to beginning oncology treat-

Dr Silver presented evidence that 60% to 95% of patients should be referred for cancer rehab based on the presence of impairments. ments. Examples include smoking cessation, alcohol reduction or cessation, nutrition, a supervised exercise program, and other services. She also discussed strategies to relieve psychosocial symptoms and distress. She concluded by saying that cancer rehabilitation is the next frontier in survivorship care. g

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

AONN CONFERENCE PROCEEDINGS

Financial and Legal Issues for Our Cancer Patients David S. Landay, JD Founder and Executive Director, Survivorship A to Z, Inc, New York, New York

r Landay discussed strategies for patients with cancer to take conDavid S. Landay, JD trol of their financial and legal issues, preparing for the “what ifs” while expecting the best. Decisions patients have to make include not only how to manage their disease, treatments, and overall health, but also the circumstances under which they will live, eg, home vs assisted living or nursing home. He noted that patients can’t give away their assets one day and go into a nursing home the next, although they can immediately apply for Medicare or Medicaid. He said that although a house doesn’t count, he counsels against having assets that aren’t liquid, recommending that patients consult their own lawyer. In any case, health insurance is key. In describing how patients should assess their own situation, he listed the types of information to gather, including employment benefits, insurance coverage, Social Security information, one’s health condition, financial information, and credit status. Financial snapshots should include today’s situation and a projection of the future under different circumstances. Mr Landay recommends staying organized, keeping a list of instructions, and keeping notes about conversations in case of discrimination; he also recommends documenting all important information. He noted that for purposes of employment there is no legal obligation to disclose a disability unless there is a danger to someone; however, reasonable accommodation requires disclosure. Accommodations inconvenience employers so one should consider their point

of view. Unpaid leave from work could be considered a reasonable accommodation. He listed applicable laws, including the Family Medical Leave Act, Employee Retirement Income Security Act, Federal Consolidated Omnibus Budget Reconciliation Act/Omnibus Budget Reconciliation Act, and Health Insurance Portability and Accountability Act, and discussed ways to replace income, eg, disability and other benefits. He recommended documenting disability, and building a case so one would be ready when it is needed. His organization’s Web site, survivorshipAtoZ.org, includes tools to apply for Social Security Disability Insurance and Supplemental Security Income to increase the chances the application will be accepted. He also discussed the possibility of returning to work after treatment and how this might affect benefits, and that patients should make sure they have property and casualty insurance and obtain coverage if they travel outside the United States, noting restrictions on preexisting conditions. He also discussed strategies to obtain health coverage for those who don’t have it, including after diagnosis. Mr Landay then went on to discuss new uses for assets, such as early withdrawal of retirement funds, and some of the tax implications of the strategies he mentioned as well as how to protect assets such as credit, and how to use property and other collateral. Mr Landay concluded by pointing out that estate planning isn’t just for patients with cancer; it’s for everyone, and everyone should have a healthcare power of attorney, a living will, a durable power of attorney, and other related documents. g

Keynote Session: Beginning the Breast Reconstructive Journey: Importance of Reconstructive Surgery Referrals and State-of-the-Art Oncoplastic Breast Reconstruction Steven Kronowitz, MD, FACS

Steven Kronowitz, MD, FACS MD Anderson Cancer Center, Houston, Texas

r Kronowitz, a plastic surgeon who performs breast reconstruction surgery only, presented state-of-the-art breast reconstruction techniques. He discussed the importance of breast reconstructive referrals and some of the

DECEMBER 2012 • VOLUME 3, ISSUE 6

barriers that might interfere with patients obtaining referrals for reconstruction. He emphasized that it is always best if the patient discusses reconstruction early and has reconstruction surgery before radiation therapy. He noted that for breast

AONNONLINE.ORG

AONN CONFERENCE PROCEEDINGS

remodeling, it is best to use the patient’s own tissue, and it’s best done at the time the tumor is removed. This works for patients who are a C cup or larger and have a small tumor, and prevents a later lumpectomy defect. For reconstruction after radiation, the breast can be smaller and can be repaired with fat grafts, and the other breast can be reconstructed to match. Dr Kronowitz presented photos taken before, during, and after the various types of reconstructive surgeries, and discussed flaps for reconstruction for patients with small breasts, radiation, scarring, and other situations. He makes an effort to use techniques resulting in the least amount of scarring to reduce stigma. The type of radiation therapy will affect the type of reconstruction that must be performed. Dr Kronowitz discussed data from studies about reconstruction. Patients are more likely to be referred if they are treated in high-volume practices at major cancer centers. There are low rates of referral for reconstruction by general surgeons who treat a lot of patients in major metropolitan areas. Patients are less likely to be referred if they are Latina, black, older, or had already had chemotherapy or radiation therapy. Regardless of ethnicity, patients who did receive breast reconstruction were more satisfied than those who did not. He noted that in a multivariate analysis neither the type of insurance (private, Medicare, or Medicaid) nor patient age had any effect on whether the patient was referred for or underwent breast reconstruction. Patients are more willing to have a mastectomy if reconstruction is discussed and patients with invasive disease or ductal carcinoma in situ wait shorter times for surgery. Delayed reconstruction means skin is gone that could have aided in reconstruction, which is even harder if done after radiation. Immediate reconstruction is better and saves 3dimensional structure and skin. Dr Kronowitz pointed out that skin-sparing mastectomy is safe because it is rare for skin to be involved in the cancer. He discussed implant-based reconstruction that used to be a 2-stage process with tissue expanders but is now often a 1-stage, nipple-sparing mastectomy going directly to implant, which is a more difficult surgery. Although it is better to do both breasts at once, this is not a reason for a double mastectomy. He also discussed the use of dermal and other matrices and several abdominal flap procedures. He prefers muscle-sparing procedures. Strategies for breast reconstruction for patients who may or will require postmastectomy radiation were presented. In patients with early stage breast cancer, it may not be known until after reconstruction if the patient will need radiation. For patients with later stage breast cancer, of course it is known that radiation will be needed. Immediate reconstruc-

AONNONLINE.ORG

tion before radiation will ruin the reconstruction results and may interfere with the radiation treatment. However, when reconstruction is performed after radiation there can be a lot of problems. Dr Kronowitz presented the approach of delayed-immediate breast reconstruction for patients who may or will require radiation therapy after mastectomy. At MD Anderson, patients often receive chemotherapy. He puts in an expander, which he deflates before radiation. He said it is also possible to use an implant, which has a higher rate of complication, or perform deep inferior epigastric per-

Regardless of ethnicity, patients who did receive breast reconstruction were more satisfied than those who did not. forator flap surgery. A prospective trial that was conducted (the results are published) showed that reconstruction had no effect on survival. Reconstruction can be performed in patients with up to stage III breast cancer. Dr Kronowitz concluded by noting that radiation oncologists are now part of the treatment team and often refer patients for reconstructive surgery. He described surveillance as a nonissue. He performs a lot of postradiation reconstruction, usually 3 months after treatment. He doesn’t do postreconstruction mammograms routinely outside of clinical studies because there is no difference in overall survival even in patients experiencing a recurrence of their cancer. He said that reconstruction used to involve reconnection of nerves, which is not done as frequently now, and has a variable outcome. g

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

AONN CONFERENCE PROCEEDINGS

Navigation in the Age of Personalized Medicine Lillie Shockney, RN, BS, MAS University Distinguished Service Associate Professor of Breast Cancer; Administrative Director, Johns Hopkins Breast Center, Johns Hopkins University, Baltimore, Maryland

Lillie Shockney, RN, BS, MAS

Sharon Gentry, RN, MSN, AOCN, CBCN Breast Health Navigator, Derrick L. Davis Forsyth Regional Cancer Center, Winston-Salem, North Carolina

s Shockney discussed how having navigators intervene very early on in the cancer continuum to establish survivorship care can affect treatment, outcomes, and complications, illustrating her points with composite care studies. All of Sharon Gentry, RN, MSN, AOCN, her patients are referred to a rehab CBCN medicine consultation before surgery. She showed the difference in outcomes when a nurse navigator performs a proactive assessment and the recommended steps are taken vs the results of a reactive approach to survivorship care, resulting in measurable differences in quality of life. A video illustrated the unique needs of patients with metastatic breast cancer who participated in a metastatic couples retreat. (Ms Shockney had been conducting retreats for patients with stage I through III cancer and was always asked by patients with metastatic disease when there would be one for them.) The retreat included separate groups for men and women as well as sessions during which all got together to share what had happened in their respective groups. There were workshops to make cards for children—for birthdays, communion, marriage,

DECEMBER 2012 • VOLUME 3, ISSUE 6

and the birth of their first child—for patients who likely will not live to participate in these milestones with their children. The retreat was provided free through donations, fundraising, and grants. Ms Gentry summarized the qualities that make cancer care personalized, such as targeting treatments to the patient’s particular disease, eg, by knowing the molecular subtype of the tumor and ensuring affordable and timely care. The treatment and the patient are 2 interacting parts. The treatment factor includes tumor biology, targeted agents, toxicities, trials, and informatics; and the patient factor includes age, comorbidities, prognosis, personal values, and resources. Ms Gentry described the Choosing Wisely® campaign that is meant to help patients choose care that is evidence-based, will be helpful, will not be redundant, will not be harmful, and is necessary. She listed the top 5 practices that ASCO considers inappropriate, which are: 1. Treatments at the end of life 2. Imaging for early-stage prostate cancer 3. Imaging for early-stage breast cancer 4. Follow-up tumor markers and test for breast cancer survivors 5. White blood cell growth factors in infection prevention Ms Gentry discussed the rationale behind these recommendations, which in general are considered inappropriate because they do not prolong life, may lead to false positives, are costly, and may cause harm. Also inappropriate are cancer-directed treatments at the end of life for patients with solid tumors who have a low performance status, have not benefited from prior evidence-based interventions, and who are not eligible for clinical trials. There are exceptions to these, eg, a patient with HER2-positive breast cancer, or with multiple myeloma, or if low performance status is due to noncancer-related conditions. These recommendations interface with the navigation role in that they are measurable, provide educational opportunities, and allow navigators to interact with other members of the healthcare team. g

AONNONLINE.ORG

AONN CONFERENCE PROCEEDINGS

Best Practices in Addressing Health Inequities Lauren Kelley, MSW, MPA Director, Research & Evaluation, Project Access–New Haven, New Haven, Connecticut Adrienne Lofton, RN, MSN Nurse Navigator, Project Access–New Haven, New Haven, Connecticut

s Kelley described Project Access–New Haven, a volunteer, community-based program that uses a best-practice model to increase access to care for underserved patients and reduce health disparities in New Haven, Connecticut. The program model, referred to as a volunteer provider network, was developed in 1996 in Asheville, North Carolina, and has been replicated by over 50 communities across the United States. Project Access–New Haven, founded in 2009 and implemented in September 2010, increases access to healthcare for low-income, uninsured, and underinsured residents of the greater New Haven area by using patient navigation to coordinate the provision of donated medical care and services to this population. Stakeholders had experienced long wait times for appointments, disease advancement, and overutilization of hospital emergency departments and inpatient services. Ms Lofton is the nurse navigator for the program. She described the core program components, which include over 300 volunteer physicians who donate their time; Yale-New Haven Hospital and the Hospital of Saint Raphael, which donate all inpatient and outpatient medical services; and contributions from the business community, eg, Metro Taxi, which provides transportation. Patients have to give back by volunteering or by writing a thank you or article; they are also responsible for meeting with and communicating regularly with their navigator and keeping their appointments. Patient navigators facilitate referrals; conduct intake interviews; work with providers to determine health needs and develop individual care plans; identify and address barriers to care, eg, by coordinating translation or transportation services; and coordinate delivery of care and services, eg, schedule and remind patients of appointments and follow up with patients and providers after appointments to determine plans and services. Project Access–New Haven has overcome barriers to care by providing free coordinated timely care, bilingual navigators, hospital translator services, transportation (taxi service), and assistance with prescription medications and surgical supplies. The program has resulted in a low noshow rate and greatly reduced usage of the emergency department. Ms Lofton presented a case study program of care for a patient referred by a navigator and diagnosed

AONNONLINE.ORG

with Hodgkin lymphoma. The Lauren Kelley, MSW, MPA program saved over $400,000 because of the value of donated services. Ms Kelley described collection of key program metrics to evaluate Project Access–New Haven. So far, the program has greatly reduced median wait from referral to enrollment and no-show rates. Follow-up data show that com- Adrienne Lofton, RN, MSN pared with baseline, self-reported health is improved, patients are more likely to be engaged in usual activities, and access to healthcare is improved. Conference participants were very interested in how Project Access–New Haven obtained free taxi service for their patients. It was explained that one of the program doctors made an appointment with the taxi company and explained the program, pointing out that some physicians had suburban offices where appointments might be more timely than at the city hospital. Patients were given a code and the costs of services provided were tracked. Ms Lofton said that the success of the program lies with the doctors who won’t take no for an answer. A lot of companies want to help, but no one had asked them. Ms Kelley said that once some companies become partners, others may also want to participate. Someone asked about tax benefits for the taxi company. Ms Kelley said they track costs so the company can have the information. Someone commented that there is a taxi program available through the American Cancer Society. There was a question about plans to expand screening. Ms Lofton said they will next look at high utilizers of the emergency department, many of whom are on Medicaid. These patients don’t necessarily have urgent medical needs, but they don’t use primary care. There is a pilot program to try to get chronic emergency department utilizers, who most probably have chronic conditions, to use primary care. There are many other needs, eg, dental care. The navigation model is new in Connecticut, but so far nearly $3 million worth of services has been donated. Lillie Shockney said that AONN is going to identify what is missing in various regions and communities and will be a partner to help provide services. g

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

AONN CONFERENCE PROCEEDINGS

The following posters were presented at the Third Annual Meeting of the Academy of Oncology Nurse Navigators.

Poster Awards

he AONN Leadership Council served as the judging team for awards for posters presented at the conference. According to Ms Shockney, “Each of the poster abstracts is a fantastic opportunity to expand and publish.” The 6 poster categories and the winners for each are: • Patient education: Role of navigation and patient education in the treatment of complex cancers: our experience with head and neck cancer patients. Barbara R. McHale, RN, BS, OCN, CBCN, and colleagues, Samaritan Hospital, St. Peter’s Health Partners, Women’s Health Center, Cancer Treatment Center, Troy, NY. Judges’ comments included, “The abstract showed strength of navigation from diagnosis to survivorship, creative color-coded tool, decreased wait time, increased adherence.” • Psychological support: Development of a survivorship celebration benefits cancer survivors and cancer center staff. Kathleen Bryte, MSN, RN, OCN; Christine Ranalli, BSN, RN, OCN; Elizabeth Shumaker, MSN, RN. Ms Shumaker said, “Working

on a survivorship celebration is the total opposite of what we usually do. It was so much fun we have to do this every year—it is rejuvenating.” • Tracking processes across the continuum of care: Standardized documentation in patient navigation (PN) at Boston Medical Center (BMC). How many navigators struggle with EMR; a tool to assess support of the navigator’s role. Kathryn Ankner, PN; Katie Finn, PN; Sheldon Reeves, PN; Taylor Teschner, PN; Adrienne Holding, RN; Kathleen Finn, MSN, NP; Robyn Souza, RN, MPH; Timothy Cooley, MD. The judges noted that this is a tool that will help support the navigator role. • Original research: Nurse navigator role in prospective breast cancer. Quality improvement study: Fox Chase Cancer Center Partners’ (FCCCP) multi-institutional initiative. Elaine Sein, RN, BSN, OCN, CBCN, and colleagues. The judging team observed that several cancer centers were involved so this study affected regional care and included a lot of information and metrics, resulting in decreased time to diagnosis and treatment after the navigator program was initiated. • Screening program for the underserved: Navigationenhanced partnerships with federally qualified health centers (FQHCs) to ensure continuity of care in a mobile screening program. Debra Resnick, MS, and colleagues. The judges noted that this project included language and transportation issues and collected great community metrics. • Community outreach: Norton Cancer Institute multidisciplinary approach to survivorship care. Christy Roberts, RN, BSN, OCN, and colleagues. g

Health Monitor Network Oncology Nurse Navigator of the Year Award

he 2012 Health Monitor Network Oncology Nurse Navigator of the Year Award was presented at the poster award session by John P. Stelmachowicz to Michelle Weaver Knowles, RNC, BCN, of Missoula Montana Community Medical

DECEMBER 2012 • VOLUME 3, ISSUE 6

Center. Ms Knowles teaches breast health and works with patients with breast cancer, considering her primary role to be that of a patient advocate. October 2012 marked her 14th year as a breast cancer survivor. “I am humbled by the award,” she said. “I help patients understand the choices they make that will affect the rest of their life.”

AONNONLINE.ORG

VELCADE and Millennium are registered trademarks of Millennium Pharmaceuticals, Inc. Other trademarks are property of their respective owners. *The VELCADE Reimbursement Assistance Program does not file claims or appeal claims for callers, nor can it guarantee that you will be successful in obtaining reimbursement

V-10-0196

11/10

BREAKOUT SESSIONS

AONN Breakout Sessions

hose in attendance at the third annual AONN meeting had the opportunity to attend simultaneous breakout sessions focused on navigation strategies in the following subject areas: Breast Cancer Navigation; Thoracic Oncology Navigation; Gastrointestinal and Colorectal Cancer Navigation; Gynecologic Cancer Navigation; Prostate Cancer Navigation; Navigating the Stem Cell Transplant Population; a rapid-fire session on Head and Neck/Neuro-Oncology Navigation with a panel; and Role of the Administrator. The following are summaries and takehome points from each session.

BREAST CANCER NAVIGATION Mary C. Rooney, RN, BSN, OCN, CBCN Breast Nurse Navigator, Crozer Keystone Health System, Upland, Pennsylvania Ms Rooney described the history of Mary C. Rooney navigation at Crozer Keystone Health System. In 2006, breast patient navigation began at CrozerChester Medical Center (CCMC). The program decreased migration of inpatients out of the system from 18% to 1%, and was associated with a decrease in time-to-care and increases in satisfaction of both patients and physicians. Other benefits include screening for clinical trials and identifying high-risk patients, gaps and weaknesses in services, and opportunities for quality improvement. A lung and colorectal navigator was added in 2010. Ms Rooney identified barriers to the navigator program, which include costs associated with the navigator, and the need for the support of the administration, physicians, and ancillary staff. Solutions to overcoming these barriers include obtaining grant support for funding and developing relationships, eg, finding a champion in one’s system. Barriers to patient participation in the navigation program include lack of access, financial problems, lack of transportation and social support, patient fear, and other issues that result in lack of adherence to treatment programs. Ways to overcome these obstacles include education, developing buddy programs for patients, and utilizing both community and national resources to support the navigation program. Ms Rooney used case examples to illustrate specific barriers and solutions to surmount them. Take-Home Messages A successful navigation program requires flexibility on the

DECEMBER 2012 • VOLUME 3, ISSUE 6

part of the navigator, a team approach, and the following: • Identifying gaps • Setting goals and defining how the program will be evaluated • Making contacts, including a point of contact with patients

THORACIC ONCOLOGY NAVIGATION Pamela Matten, RN, BSN, OCN Thoracic Nurse Navigator, St. Joseph Hospital, Orange, California Ms Matten observed that thoracic oncology navigation is in its infancy, and thoracic oncology navigators are therefore in the position of being able to develop evidence-based practice models. She discussed how those who are novices in the field can develop into expert navigators by gaining experience, developing skills, and understanding patient care after achieving a sound educational base. The National Cancer Institute Community Cancer Centers Program (NCCCP; http://ncccp.cancer. gov) is a network of community hospitals throughout the United States that support cancer research and enhance cancer care. The NCCCP Quality of Care subcommittee developed the Navigation Matrix Tool, which can be used to build or advance a navigation program, and contains categories representing every component of navigation that programs should contain. Ms Matten described the thoracic oncology program matrix tool that can be used to assess thoracic navigation programs based on the NCCCP Navigation Matrix and her more than 8 years of experience as a thoracic oncology nurse navigator. The areas of evaluation include team development, strategic planning, marketing, patients navigated, and multidisciplinary conference participation. Team development includes assigning a program medical director and educating primary care physicians on the referral process. Strategic planning includes developing a formal business plan for the program and keeping it updated. Marketing activities include educating primary care physicians in a variety of settings, developing brochures and yearly update letters, developing a program Web site, and forming community partnerships such as participation at health fairs. Patients for navigation are identified through pathology reports. Multidisciplinary conference participation involves presenting patients at general canPamela Matten

AONNONLINE.ORG

BREAKOUT SESSIONS

cer and thoracic-specific oncology conferences. The navigator’s role includes identifying patients to present, following up about recommendations with patients and/or their physicians, and developing a formal written report on the treatment plan to be shared with the patient and physicians. Other thoracic oncology navigator program activities include measuring and evaluating outcomes, educating patients about clinical trial participation, initiating and marketing screening programs, eg, a lung CT screening program; education about prevention, eg, smoking cessation; referrals to support group and pulmonary rehabilitation programs (where available—if they are not, advocacy for these programs may be required), and providing surveillance and survivorship information and care plans.

Take-Home Messages • Thoracic oncology navigation is a developing area and provides navigators with the opportunity to build evidence-based practice models • The NCCCP Navigation Matrix Tool can be used to build or advance a navigation program and provides a way to achieve benchmark status GASTROINTESTINAL AND COLORECTAL CANCER NAVIGATION Maura Kadan, RN, MSN, OCN Clinical Program Manager, Colorectal Malignancies, Johns Hopkins Hospital, Baltimore, Maryland Coralyn Martinez, MSN, RN, OCN GI Nurse Navigator, The Lacks Cancer Center, Saint Mary’s Health Care, Grand Rapids, Michigan Ms Martinez described The Lacks Cancer Center, which is an NCCCP Coralyn Martinez site, as well as its gastrointestinal (GI) program which includes a dedicated GI cancer nurse navigator, weekly treatment planning conferences, a multidisciplinary GI cancer clinic, and a program to measure and assess outcomes. The 5 major program outcome measures are timeliness, patient- centeredness, efficiency, effectiveness, and equitableness. Ms Martinez pointed out that at each stage of the patient journey, from prediagnosis and screening, to newly diagnosed, through treatment, then to surveillance, there are different patients with different needs. The navigator role can be defined to support and guide persons with abnormal cancer screening or a new can-

AONNONLINE.ORG

cer diagnosis in accessing the cancer care system, overcoming barriers to healthcare; and facilitating timely, quality care provided in a culturally sensitive manner. The goal of timeliness is defined as patient contact in less than 2 days, organization and coordination of diagnostic studies in less than 6 days, coordination of multidisciplinary appointments in less than 10 days, and coordination of the initiation of treatment in less than 25 days. Patient-centered care includes making shared and informed decisions, providing a single contact person for the patient throughout the cancer journey, and improving patient quality of life and satisfaction. Efficient and effective quality care involves following National Comprehensive Cancer Network guidelines for diagnostic studies and course of treatment, coordinating multidisciplinary evaluation, and presenting patient cases at tumor boards. Ms Martinez provided metrics showing that The Lacks Cancer Center program is achieving or improving their outcome measure goals.

Take-Home Messages • Treatment summary/care plans are available at: journeyforward.org, www.livestrongcareplan.org/treat ment_summary.cfm, and www.cancer.net/patient/ Survivorship/ASCO+Cancer+Treatment+Summaries • Patient concerns that must be addressed include sexuality/intimacy, anxiety/fear, depression, neuropathy, GI disturbances, fatigue, diet/exercise • Patients with metastatic cancer and patients who are young or elderly have special needs • Resources for patients are available free of cost from the Colon Cancer Alliance at: www.ccalliance.org and for younger patients at www.ulmanfund.org GYNECOLOGIC CANCER NAVIGATION Robin A. Atkinson, RN, BSN, OCN GYN Oncology Nurse Navigator, Derrick L. Davis Forsyth Regional Cancer Center, Winston-Salem, North Carolina This session was a networking opportunity for gynecology navigators to share their best practices concerning receiving referrals, interacting with referring physicians and their staff, self-promotion, and patient programs. Issues such as job security, navigation barriers, professional standing in the medical community, available resources, patient follow-through, survivorship plans, and additional activities such as creating blogs and publishing articles were discussed.

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

BREAKOUT SESSIONS

Take-Home Messages • Navigators need to be familiar with local community and national resources for patients with cancer and with local and national offices of the American Cancer Society • Navigators need to know what in-house resources are available to patients, eg, support groups, nutritional counseling PROSTATE CANCER NAVIGATION Juli Aistars, RN, MS, APN, AOCN Prostate Nurse Navigator, Northwest Community Hospital, Arlington Heights, Illinois Ms Aistars discussed the development of the prostate cancer navigation role, which was implemented in 2007, from the perspective of a suburban, independent community hospital. Patient navigation roles for prostate cancer, which is more common in men than breast cancer is in women, include earlier detection, timely diagnosis and treatment, better coordination of services, and overcoming financial and cultural barriers. The key elements of the Northwest Community Hospital program included a physician champion, prostate advisory board, marketing, evaluation using quality data, community outreach, professional networking, and program evaluation. Some of the gaps that the program identified and needs that were addressed were a lack of referrals to radiation oncology, ability to obtain a second opinion closer to the patient’s home, anxiety concerning discharge with an indwelling catheter that was addressed with preoperative education, and concerns about survivorship and side effects. These concerns were addressed with an onsite prostate cancer quality-of-life study, a postoperative guide for patients undergoing prostatectomy, and follow-up care. One barrier to implementing navigation programs is return on investment because navigation is typically not a service that is charged for. Increased referrals to radiation oncology, recognition of the facility as a comprehensive prostate cancer program, growth of the program, and grant funding from the Northwest Community Hospital Foundation may address this barrier. Ms Aistars pointed out that there are many potential initial contact points between patient and navigator, such as at the time of suspicious findings, at the time of diagnosis, in the decision about treatment phase, postoperatively, after radiation therapy, at recurrence, and in advanced disease. She illustrated this with several case studies.

DECEMBER 2012 • VOLUME 3, ISSUE 6

Take-Home Messages • Nurse navigation should be based on the needs of the community and the patient population • The role of the nurse navigator is always evolving • Measurable outcomes are key • Return on investment should be taken into consideration NAVIGATING THE STEM CELL TRANSPLANT POPULATION Tina Scherer, RN, MSN, OCN Oncology Nurse Navigator, Helen F. Graham Cancer Center, Christiana Care Health System, Newark, Delaware The objectives of this break-out session were to discuss the 3 types of stem cell transplant, identify the specific navigation needs of the hematology patient, and recognize the importance of team collaboration in navigating the hematology population. Ms Scherer described the multidisciplinary programs at her center, how the teams communicate, and where navigators can help in the treatment process, such as following patients through the continuum of care, helping with needs assessments, referring to ancillary services, coordinating with all multidisciplinary centers, educating patients and staff, and assisting with support groups. Ms Scherer then provided background on stem cell transplantation, including its history, how stem cells are obtained, and the types of transplant currently available. She described the transplant patient’s process of navigation, which includes referral, establishing a patient treatment journal, patient education, psychosocial assessment, identification of ancillary services and supplies, coordinating with the inpatient team for discharge planning, and postdischarge follow-up. Ms Scherer presented some of her center’s tools, including the assessment form, pretransplant patient-meeting worksheet and checklist, insurance screening form, discharge planning worksheet, and pretransplant support services summary sheet; she also shared case studies. Take-Home Messages • The hematology population has many unique needs, including numerous inpatient admissions, arduous treatment plans, specific needs at home, and short timelines for care • Navigation of hematology patients requires specific multifaceted educational, psychosocial, and durable needs requiring the navigator, as point person, to ensure these needs are met • Team collaboration is key

AONNONLINE.ORG

BREAKOUT SESSIONS

HEAD AND NECK/NEURO-ONCOLOGY NAVIGATION Heather Stern, RN, BSN, CNOR, OCN Head and Neck Nurse Navigator, St. Joseph Hospital, Orange, California Ms Stern described her institution’s navigator program, which includes 8 disease site–specific navigators (7 RNs and 1 PA), an outreach nurse navigator, a Pacific Islander navigator, a financial navigator, and a social worker. She discussed the nurse navigator role in general, as well as the head and neck and neuro-oncology multidisciplinary team members and the specifics of head and neck and neuro-oncology navigation, including capturing and assessing patients and coordinating their care, and providing supportive care and survivorship. She illustrated these phases with case studies. Ms Stern described navigation tools, showing examples of the nurse navigator database that is part of the electronic medical record, which documents information and metrics throughout the patient journey, and a radiation therapy assessment tool.

Take-Home Messages • The role of the nurse navigator is multifaceted • Multidisciplinary teams are integral to successful treatment of patients • Early contact with patients at the time of diagnosis helps establish a supportive relationship • Continuous assessment throughout multimodality treatment can reduce treatment days • Coordination of care, supportive care, and survivorship care are essential components of navigation THE ROLE OF THE ADMINISTRATOR Lisa Shalkowski, RN, BSN, MSM Director, Oncology Services, Virtua Health, Berlin, New Jersey Barbara Francks, RN, BSN, CBCN Breast Nurse Navigator, Virtua Health, Berlin, New Jersey Virtua’s breast care program strategy evolved from a fragmented process involving over 60 steps that resulted in random referrals, limited contact with patients, difficulty obtaining access to surgeons, and long cycles. The breast care program strategy that was developed was intended to create a personalized approach for patients and to follow a datadriven statistical problem-solving model (Design for Six Sigma) that included the following phases: define, measure, analyze, design, and verify. The definition phase included lit-

AONNONLINE.ORG

erature searches, defining best practices, and listening to the voice of the customer, ie, the patients and survivors with cancer, their caregivers, and physicians and their office managers. Findings were obtained from focus groups and physician surveys. Project goals were established and included improving coordination of high-quality, compassionate care, providing a single consistent point of patient contact, timely delivery of services, improvement of patient satisfaction, and improved retention and referrals to Virtua’s physicians, programs, and services. A pilot plan was implemented with 1 navigator in a large gynecology practice, and 2 half-time navigators in 2 physician practices over an 8-month time line. A major accomplishment was having the information technology staff create a specific database that could be used to track intake and surgery, assign a navigator, create a patient summary and reminders (task list), and be available as “view only” for physicians and support staff. Examples of the physician office referral, patient summary, task list, and reminder letter were shown. The surveillance/survivorship program includes follow-up, addressing late side effects, and establishing the navigator as a long-term resource. Virtua has increased its breast program and is launching programs in colorectal, thoracic, gynecologic, and prostate cancers.

Take-Home Messages • The administrator’s role includes interacting and communicating with the entire team and stakeholders, developing program goals, and proving the value of the program • Interaction between the administrator and navigators includes team and one-to-one communication, prompt problem solving, and recognition of navigator autonomy • A physician champion and physician buy-in are important • The navigator must foster physician relationships g

JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP

PANEL DISCUSSION

Practice Setting–Specific Panel Discussion Roxanne Parker, RN, MSN, CPN (Moderator) Arizona Oncology, Phoenix, Arizona Jessie R. Schol, RN, BSN, OCN Temple University Healthcare System, Philadelphia, Pennsylvania Roxanne Parker, RN, MSN, CPN

Karyl Blaseg, RN, MSN, OCN Billings Clinic, Billings, Montana

his moderated panel discussion included representatives of office-based, academic, and community hospital–based settings. Each presenter focused on her institution’s practices, and the presentations led to a lively question and answer session Jessie R. Schol, RN, BSN, OCN addressing issues such as how to treat patients who feel the navigator has no other patients to work with, how to get a navigation program started, how to connect with former inpatients once they leave the service, and how to “discharge” patients from the navigation setting. Resources for tools that have already been developed Karyl Blaseg, RN, MSN, OCN were also discussed. Ms Parker reminded participants that there may be different titles for the navigator role, eg, “patient ambassador.” In Ms Schol’s practice, navigators lay the groundwork for clinical trial participation. They do not see patients through the whole continuum of cancer care, but hand them off. However, they remain in contact with some patients. Ms Blaseg described the Billings Clinic data capture system. They used to use Excel spreadsheets for tracking everything and had initial problems transferring information to electronic medical records (EMRs). They had to push their IT department to help, but now they are using EMRs to track data. During the question and answer period, Ms Knowles asked how to handle patients who think you’re just sitting around waiting for them to call. Ms Parker tries to treat them right then as if they were the only one, or she schedules a call back. Ms Schol says one has to come to peace with the fact that one’s job is never done. Patient needs have to be prioritized. Navigators have to recognize their accomplishments each day. Ms Parker said navigators are the go-to person for patients and the whole treatment

DECEMBER 2012 • VOLUME 3, ISSUE 6

team, so the team has to know what their department can handle. Navigators can’t do all things for all people whether these people are patients or coworkers. In response to a question about how the navigation program was started, Ms Schol said staff members did a gap analysis and spent a lot of time talking to new patients. They realized the practice lost a lot of potential new patients who couldn’t get through. Now the nurse navigator is their first call. Someone who regularly sees inpatients with hematologic malignancies expressed difficulty contacting patients when they are outpatients or have been discharged. Ms Blaseg suggested going to appointments with the patients. The questioner responded that the practice has 2 different sites, and they are in the process of building relationships with healthcare providers. Ms Blaseg suggested connecting with patients in the treatment area. Ms Parker does something similar. She tracks all types of appointments and tries to call each patient or sends them a letter. Ms Blaseg was asked how she accomplishes discharging patients. She says the navigator touches base with patients, eg, if they are in surveillance and in a waiting room or after their doctor’s appointment. They used to send discharge letters, but that felt strange. They also used to discharge patients who were done with treatment, giving them a Facing Forward book. Now they discharge the patient but leave the door open. Patients are not ready to part with their navigator at the last appointment, so it’s done later during surveillance. Ms Parker noted that her practice setting doesn’t have a formal survivorship program yet. She said they are developing an exit interview. Someone whose program has no navigators wanted templates for intake forms and other documents. Her program has no EMRs. Ms Blaseg pointed out that the American College of Chest Physicians network has online tools, and that there are other online resources. Ms Shockney said that when she thinks about capturing information, she first asks herself what she would do with it, what it is needed for, when it is needed, and what will be done with it. g

AONNONLINE.ORG

www.CutaneousMalignancies.com

SAVE THE DATE • JULY 26-28, 2013 SECOND ANNUAL

CONFERENCE CO-CHAIRS SANJIV S. AGARWALA, MD Professor of Medicine Temple University School of Medicine Chief, Oncology & Hematology St. Luke’s Cancer Center Bethlehem, PA STEVEN J. O’DAY, MD Hematology/Oncology Director of Clinical Research Director of Los Angeles Skin Cancer Institute at Beverly Hills Cancer Center Clinical Associate Professor of Medicine USC Keck School of Medicine Adjunct Faculty, John Wayne Cancer Institute Beverly Hills, CA AXEL HAUSCHILD, MD Professor of Dermatology Department of Dermatology University of Kiel Kiel, Germany

Melanoma • Basal Cell Carcinoma • Cutaneous T-Cell Lymphoma Squamous Cell Carcinoma • Merkel Cell Carcinoma

July 26-28, 2013 Hyatt Regency La Jolla at Aventine 3777 La Jolla Village Drive San Diego, California

www.CutaneousMalignancies.com

CLINICAL GUIDELINES

Clinical Survivorship Guidelines: What Navigators Need to Know Katherine Sharpe, MTS Managing Director, Prevention and Survivorship Strategy, American Cancer Society, Atlanta, Georgia Mandi Pratt-Chapman, MA Associate Director, Community Programs, George Washington University Cancer Institute, Washington, DC

s Sharpe discussed the role of the American Cancer Society in developing survivorship guidelines and how efforts of the National Cancer Survivorship Resource Center address gaps in clinical survivorship guidelines. She reviewed the evolution of cancer survivorship and the factors that are leading to projected increases in patients with cancer and in survivors. She also reviewed studies showing both the high incidence of secondary health problems and nonmedical issues that are not being managed and the survivors’ continuing information needs that are not being met. The Survivorship Center’s goals include improving the quality of life of cancer survivors and their caregivers and reducing morbidity and mortality related to cancer. Achieving these goals requires identifying and developing solutions for gaps in current resources, which include a lack of survivorship care guidelines for most cancers and a lack of guidance aimed at primary care providers in the community. The initiative was to use any available resources, fill the identified gaps, and remove barriers at the levels of the individual patient, healthcare system, and national policies. Work groups were set up based on policy, advocacy, and quality-of-life issues, among others. The lack of clinical survivorship care guidelines was a significant gap identified at the healthcare systems level, and the recommendations included developing survivorship care guidelines for clinical and psychosocial needs. Specific gaps included: • Few existing follow-up care guidelines for most cancers, especially for the US-based healthcare system • When available, follow-up care is embedded in large treatment guidelines and mostly addresses surveillance • Lack of comprehensive, patient-centered guidelines beyond treatment • Little, if any, cancer care guidance is geared to primary care providers • Lack of a definitive model for care delivery • Difficulties with reimbursement of survivorship follow-up care (eg, survivorship care plan) Ms Sharpe presented the steps involved in guideline development, with primary care providers as the target

DECEMBER 2012 • VOLUME 3, ISSUE 6

Katherine Sharpe, MTS

audience. The prephase involved gathering recommendations and was followed by phase 1, drafting clinical care grids of common issues and recommended follow-up based on clinical provider experience. Phase 1A involved development of psy- Mandi Pratt-Chapman, MA chosocial guidance. This has led to a more robust development process. Ms Pratt-Chapman continued the discussion by describing where her institution is in the development process. Guidelines are tested in draft form, then reviewed by experts and refined, after which they are sent to the American Cancer Society for review. The guidelines will be going through several more rounds of review and refine-

The Survivorship Center’s goals include improving the quality of life of cancer survivors and their caregivers and reducing morbidity and mortality related to cancer. ment in line with guideline development processes. She offered a “sneak peek” at some of the breast cancer guidelines, which are still in development, noting that the navigator role resides to a great extent in the care coordination and practice implication section of the guidelines. She also showed a summary of surveillance activities recommended for primary care providers. Ms Pratt-Chapman’s group is also focusing on provider education, because without that, dissemination of the guidelines will not be effective. Education will include an online training workbook for guidelines, webinars about survivorship, and initiatives concerning healthcare systems and policy. Rollout will begin next year. There are also patient and family education programs planned.

AONNONLINE.ORG

MAY 2-5, 2013

THIRD ANNUAL CONFERENCE

Influencing the Patient-Impact Factor May 2-5, 2013 Westin Diplomat Hollywood, Florida

For more information please visit

www.AVBCConline.org

CLINICAL GUIDELINES

Ms Pratt-Chapman observed that although the end users of the guidelines are primary care physicians, navigators provide the link between practitioners and patients. She presented the content outline for guidelines manuscripts that will be published and a template for a guidelines summary. She hopes cancer survivors will be educated to request a treatment summary and survivorship care plan. Patients should also receive routine counseling on general health promotion as well as specific cancer screening. Ms Pratt-Chapman described a conceptual model of survivorship navigation revolving around patient quality of life and how the navigator is an expert on the patient, taking into account factors internal and external to the patient. This allows the navigator to help remove barriers to care, improve the self-efficacy of the survivor, and provide a liaison to the healthcare team. Resources include: • The Survivorship Center at www.cancer.org/survivor shipcenter • Life After Treatment Guide at www.cancer.org/s urvivorshipguide • Prescription for Cancer Information at www.cancer. org/survivorshipprescription • Navigator Training Webinar and Patient Resources Compendium at www.gwumc.edu/gwci/survivorship. html

The Survivorship Center is involving primary care physicians in the guideline process to address their needs, as well as how to implement solutions and what tools might be needed.... Other resources are or will be available from the Survivorship Center Web site. Ms Shockney said that some survivors have no relation with their primary care providers, so navigators must foster it or help patients find a new provider with whom they can develop a trusting relationship. She pointed out that over the course of cancer from diagnosis through treatment, patients’ tolerance for side effects change, and this should be studied. Patients don’t necessarily understand the long-term

DECEMBER 2012 • VOLUME 3, ISSUE 6

effects of treatment when they are diagnosed. A navigator said he has difficulty working with some primary care providers. The Survivorship Center is involving primary care physicians in the guideline process to address their needs, as well as how to implement solutions and what tools might be needed, eg, integration with electronic medical records, or apps. The American Cancer Society also has a primary care advisory committee, and primary care will be represented in the expert review of the guidelines. Another navigator said that the primary care physicians in her setting are aware of survivorship plans but do not want to own them. Ms Pratt-Chapman thought they might want to care for these patients but not feel empowered to do so. At her institution, there is an educational program to help implement this care. Ms Sharpe added that a lot of survivorship care—lifestyle issues, managing comorbidities—should occur in the primary care setting, even if that aspect of care is not part of a formal guideline. Ms Sharpe’s group is trying to establish the appropriate time for transition, and what care is best delivered by the oncologist and what by the primary care physician. Ms Gentry says she sees this in her community setting, and navigators need to train patients about which provider should see the patient depending on current symptoms, eg, to see the primary care physician if the patient has the flu. Ms Shockney divided primary care physicians into 3 groups: the oldest ones who refuse to care for patients with cancer once they are diagnosed, the “adolescents” who are planning to retire and may or may not provide care for survivors, and the younger physicians who will treat cancer as a chronic disease. Patients also need to be trained for self-management at diagnosis. g

AONNONLINE.ORG

$ $% "!%"$& ' $&' "! $ %% ( " # !& $) $ &% "$ # $& # & "! www.globalbiomarkersconsortium.com

SECOND ANNUAL CONFERENCE

Implementing the Promise of Personalized Cancer Care

! !

PM O

PERSONALIZED MEDICINE IN ONCOLOGY

Personalized Medicine in Oncology

www.globalbiomarkersconsortium.com

With biomarker testing in advanced non–small-cell lung cancer (NSCLC)...

You can help improve patient outcomes through a multidisciplinary approach ~1 in 5 patients with advanced NSCLC has a tumor with EGFR (ErbB1) mutations or ALK rearrangements1-6

[V WH[PLU[Z

,.-9 4 VY (32

You play a critical role as part of the multidisciplinary team that identifies biomarkers to diagnose and treat advanced NSCLC

Visit

/HWV7HVW1RZ FRP

t Expert commentary t Relevant case studies t Insights about your role in biomarker testing t The benefits of a multidisciplinary approach

References: 1. Riely GJ. Second-generation epidermal growth factor receptor tyrosine kinase inhibitors in non-small cell lung cancer. J Thorac Oncol. 2008;3(suppl 2):S146-S149. 2. Herbst RS, Heymach JV, Lippman SM. Lung cancer. N Engl J Med. 2008;359(13):1367-1380. 3. Rosell R, Moran T, Queralt C, et al. Screening for epidermal growth factor receptor mutations in lung cancer. N Engl J Med. 2009;361(10):958-967. 4. Kwak EL, Bang Y-J, Camidge DR, et al. Anaplastic lymphoma kinase inhibition in non-small-cell lung cancer. N Engl J Med. 2010;363(18):1693-1703. 5. Data on file. Synovate US Oncology Monitor (USTOM), Jan-Dec 2011. 6. National Cancer Institute. Lung cancer. Non-Small Cell Lung Cancer Treatment (PDQ). Cellular classification of NSCLC. http://www.cancer.gov/cancertopics/pdq/treatment/non-small-cell-lung/healthprofessional /page2. Accessed January 18, 2012. Copyright ©2012. Boehringer Ingelheim Pharmaceuticals, Inc. All rights reserved. (5/12) OC209900PROF-A

™