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JONS_November 2011_v6_JONS_November 2011 11/16/11 11:54 AM Page 1

NOVEMBER 2011

www.AONNonline.org

VOL 2, NO 6

Highlights from the

Second Annual Navigation and Survivorship Conference Highlights Include: • Best Practices in Navigation and Survivorship • Gauging Navigation Program Performance • Setting Up and Maintaining Survivorship Programs • Screening for Psychosocial Distress • Providing Compassionate Care • Site-Specific and Multi-Tumor Type Navigation • Navigation Program Administration • Keynote Spotlights

Also in this issue: Lung Screening Guidelines Published by NCCN By Pam Matten, RN, BSN, OCN

It’s (Supposed to Be) a Wonderful Life: A Case Study Demonstrating the Positive Impact of Survivorship Care By Lillie D. Shockney, RN, BS, MAS

TM

NAVIGATING PATIENTS ACROSS THE CONTINUUM OF CANCER CARE

© 2011 Green Hill Healthcare Communications, LLC


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Your inspiration, You guide your HER2+ breast cancer patients through their course of treatment with care and support. The HER Connection program can provide some extra help, including:

Text tips and email tailored to HER journey Live outreach call program Live 24/7 support line

Boxed WARNINGS and Additional Important Safety Information sHerceptin administration can result in sub-clinical and clinical cardiac failure. The incidence and severity was highest in patients receiving Herceptin with anthracycline-containing chemotherapy regimens. In a pivotal adjuvant trial, one patient who developed CHF died of cardiomyopathy

sExposure to Herceptin during pregnancy can result in oligohydramnios, in some cases complicated by pulmonary hypoplasia and neonatal death

sEvaluate cardiac function prior to and during treatment. For adjuvant therapy, also evaluate cardiac function after completion of Herceptin. Discontinue Herceptin for cardiomyopathy

sDetection of HER2 protein overexpression is necessary for selection of patients appropriate for Herceptin therapy

sExacerbation of chemotherapy-induced neutropenia has also occurred

sHerceptin can result in serious and fatal infusion reactions and pulmonary toxicity. Discontinue Herceptin for anaphylaxis, angioedema, interstitial pneumonitis, or acute respiratory distress syndrome

Š2011 Genentech USA, Inc.

sThe most common adverse reactions associated with Herceptin use were fever, nausea, vomiting, infusion reactions, diarrhea, infections, increased cough, headache, fatigue, dyspnea, rash, neutropenia, anemia, and myalgia

So. San Francisco, CA

All rights reserved.

HER0000422100

6/11


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HER commitment

Adjuvant indications Herceptin is indicated for adjuvant treatment of HER2-overexpressing node-positive or nodenegative (ER/PR-negative or with one high-risk feature*) breast cancer:

sAs part of a treatment regimen containing doxorubicin, cyclophosphamide, and either paclitaxel or docetaxel sWith docetaxel and carboplatin sAs a single agent following multi-modality anthracycline-based therapy *High-risk is defined as ER/PR positive with one of the following features: tumor size >2 cm, age <35 years, or tumor grade 2 or 3.

Please see brief summary of full Prescribing Information, including Boxed WARNINGS and additional important safety information, on the following pages.


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WARNING: CARDIOMYOPATHY, INFUSION REACTIONS, EMBRYO-FETAL TOXICITY, and PULMONARY TOXICITY Cardiomyopathy Herceptin administration can result in sub clinical and clinical cardiac failure. The incidence and severity was highest in patients receiving Herceptin with anthracycline containing chemotherapy regimens. Evaluate left ventricular function in all patients prior to and during treatment with Herceptin. Discontinue Herceptin treatment in patients receiving adjuvant therapy and withhold Herceptin in patients with metastatic disease for clinically significant decrease in left ventricular function. [see Warnings and Precautions and Dosage and Administration] Infusion Reactions; Pulmonary Toxicity Herceptin administration can result in serious and fatal infusion reactions and pulmonary toxicity. Symptoms usually occur during or within 24 hours of Herceptin administration. Interrupt Herceptin infusion for dyspnea or clinically significant hypotension. Monitor patients until symptoms completely resolve. Discontinue Herceptin for anaphylaxis, angioedema, interstitial pneumonitis, or acute respiratory distress syndrome. [see Warnings and Precautions] Embryo-Fetal Toxicity Exposure to Herceptin during pregnancy can result in oligohydramnios and oligohydramnios sequence manifesting as pulmonary hypoplasia, skeletal abnormalities, and neonatal death. [see Warnings and Precautions, Use in Specific Populations]

Study Regimen 1 & 2a ACb→Paclitaxel+ Herceptin 3 Chemo→Herceptin 4 ACb→Docetaxel+ Herceptin 4 Docetaxel+Carbo+ Herceptin

Study 5 (AC)b 5 (paclitaxel) 6

Incidence of CHF Herceptin Control 2% (32/1677) 0.4% (7/1600) 2% (30/1678) 0.3% (5/1708) 2% (20/1068) 0.3% (3/1050) 0.4% (4/1056) 0.3% (3/1050)

Incidence NYHA I−IV NYHA III−IV Herceptin Control Herceptin Control

Event Cardiac Dysfunction 28% Cardiac Dysfunction 11% Cardiac Dysfunctionc 7%

7%

19%

3%

1%

4%

1%

N/A

5%

N/A


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Adverse Reaction

1 Year Herceptin Observation (n= 1678) (n=1708)

Nervous System Disorders Headache 162 (10%) Paraesthesia 29 (2%) Skin & Subcutaneous Tissue Disorders Rash 70 (4%) Nail Disorders 43 (2%) Pruritis 40 (2%) General Disorders Pyrexia 100 (6%) Edema Peripheral 79 (5%) Chills 85 (5%) Aesthenia 75 (4.5%) Influenza-like Illness 40 (2%) Sudden Death 1 (0.06%) Infections Nasopharyngitis 135 (8%) UTI 39 (3%) Immune System Disorders Hypersensitivity 10 (0.6%) Autoimmune Thyroiditis 4 (0.3%)

Adverse Reaction

1 Year Herceptin Observation (n= 1678) (n=1708)

Cardiac Hypertension 64 (4%) 35 (2%) Dizziness 60 (4%) 29 (2%) Ejection Fraction Decreased 58 (3.5%) 11 (0.6%) Palpitations 48 (3%) 12 (0.7%) Cardiac Arrhythmiasb 40 (3%) 17 (1%) Cardiac Failure Congestive 30 (2%) 5 (0.3%) Cardiac Failure 9 (0.5%) 4 (0.2%) Cardiac Disorder 5 (0.3%) 0 (0%) Ventricular Dysfunction 4 (0.2%) 0 (0%) Respiratory Thoracic Mediastinal Disorders Cough 81 (5%) 34 (2%) Influenza 70 (4%) 9 (0.5%) Dyspnea 57 (3%) 26 (2%) URI 46 (3%) 20 (1%) Rhinitis 36 (2%) 6 (0.4%) Pharyngolaryngeal Pain 32 (2%) 8 (0.5%) Sinusitis 26 (2%) 5 (0.3%) Epistaxis 25 (2%) 1 (0.06%) Pulmonary Hypertension 4 (0.2%) 0 (0%) Interstitial Pneumonitis 4 (0.2%) 0 (0%) Gastrointestinal Disorders Diarrhea 123 (7%) 16 (1%) Nausea 108 (6%) 19 (1%) Vomiting 58 (3.5%) 10 (0.6%) Constipation 33 (2%) 17 (1%) Dyspepsia 30 (2%) 9 (0.5%) Upper Abdominal Pain 29 (2%) 15 (1%) Musculoskeletal & Connective Tissue Disorders Arthralgia 137 (8%) 98 (6%) Back Pain 91 (5%) 58 (3%) Myalgia 63 (4%) 17 (1%) Bone Pain 49 (3%) 26 (2%) Muscle Spasm 46 (3%) 3 (0.2%)

49 (3%) 11 (0.6%) 10 (0.6%) 0 (0%) 10 (0.6%) 6 (0.4%) 37 (2%) 0 (0%) 30 (2%) 3 (0.2%) 0 (0%) 43 (3%) 13 (0.8%) 1 (0.06%) 0 (0%)

Herceptin Single + Paclitaxel Herceptin ACb Agenta Paclitaxel Alone + ACb Alone n = 352 n = 91 n = 95 n = 143 n = 135 Body as a Whole Pain 47% 61% 62% 57% 42% Asthenia 42% 62% 57% 54% 55% Fever 36% 49% 23% 56% 34% Chills 32% 41% 4% 35% 11% Headache 26% 36% 28% 44% 31% Abdominal pain 22% 34% 22% 23% 18% Back pain 22% 34% 30% 27% 15% Infection 20% 47% 27% 47% 31% Flu syndrome 10% 12% 5% 12% 6% Accidental injury 6% 13% 3% 9% 4% Allergic reaction 3% 8% 2% 4% 2% Cardiovascular Tachycardia 5% 12% 4% 10% 5% Congestive 7% 11% 1% 28% 7% heart failure Digestive Nausea 33% 51% 9% 76% 77% Diarrhea 25% 45% 29% 45% 26% Vomiting 23% 37% 28% 53% 49% Nausea and vomiting 8% 14% 11% 18% 9% Anorexia 14% 24% 16% 31% 26% Heme & Lymphatic Anemia 4% 14% 9% 36% 26% Leukopenia 3% 24% 17% 52% 34% Metabolic Peripheral edema 10% 22% 20% 20% 17% Edema 8% 10% 8% 11% 5% Musculoskeletal Bone pain 7% 24% 18% 7% 7% Arthralgia 6% 37% 21% 8% 9% Nervous Insomnia 14% 25% 13% 29% 15% Dizziness 13% 22% 24% 24% 18% Paresthesia 9% 48% 39% 17% 11% Depression 6% 12% 13% 20% 12% Peripheral neuritis 2% 23% 16% 2% 2% Neuropathy 1% 13% 5% 4% 4% Respiratory Cough increased 26% 41% 22% 43% 29% Dyspnea 22% 27% 26% 42% 25% Rhinitis 14% 22% 5% 22% 16% Pharyngitis 12% 22% 14% 30% 18% Sinusitis 9% 21% 7% 13% 6% Skin Rash 18% 38% 18% 27% 17% Herpes simplex 2% 12% 3% 7% 9% Acne 2% 11% 3% 3% < 1% Urogenital Urinary tract infection 5% 18% 14% 13% 7%


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LVEF <50% and Absolute Decrease from Baseline

Absolute LVEF Decrease

LVEF ≥10% ≥16% <20% and <50% decrease decrease ≥10% ≥20% Studies 1 & 2b AC→TH 22.8% (n=1606) (366)

Body System/ Adverse Event

Herceptin +FC (N = 294) N (%)

FC (N = 290) N (%)

All Grades Grades 3 / 4

All Grades Grades 3/ 4

Investigations Neutropenia 230 (78) 101 (34) Hypokalemia 83 (28) 28 (10) Anemia 81 (28) 36 (12) Thrombocytopenia 47 (16) 14 (5) Blood And Lymphatic System Disorders Febrile Neutropenia _ 15 (5) Gastrointestinal Disorders Diarrhea 109 (37) 27 (9) Stomatitis 72 (24) 2 (1) Dysphagia 19 (6) 7 (2) Body as a Whole Fatigue 102 (35) 12 (4) Fever 54 (18) 3 (1) Mucosal Inflammation 37 (13) 6 (2) Chills 23 (8) 1 (≤1) Metabolism And Nutrition Disorders Weight Decrease 69 (23) 6 (2) Infections And Infestations Upper Respiratory Tract Infections 56 (19) 0 (0) Nasopharyngitis 37 (13) 0 (0) Renal And Urinary Disorders Renal Failure and Impairment 53 (18) 8 (3) Nervous System Disorders Dysgeusia 28 (10) 0 (0)

212 (73) 83 (29) 69 (24) 16 (6) 61 (21) 30 (10) 33 (11) 8 (3) _

8 (3)

80 (28) 43 (15) 10 ( 3)

11 (4) 6 (2) 1 (≤1)

82 (28) 36 (12)

7 (2) 0 (0)

18 (6) 0 (0)

2 (1) 0 (0)

40 (14)

7 (2)

29 (10) 17 (6)

0 (0) 0 (0)

42 (15)

5 (2)

14 (5)

0 (0)

18.3% (294)

11.7% (188)

33.4% (536)

9.2% (148)

AC→T (n=1488)

9.1% (136)

5.4% (81)

2.2% (33)

18.3% (272)

2.4% (36)

Study 3 Herceptin (n=1678)

8.6% (144)

7.0% (118)

3.8% (64)

22.4% (376)

3.5% (59)

Observation 2.7% (n=1708) (46)

2.0% (35)

1.2% (20)

11.9% (204)

1.2% (21)

Study 4c TCH (n=1056)

8.5% (90)

5.9% (62)

3.3% (35)

34.5% (364)

6.3% (67)

AC→TH (n=1068)

17% (182)

13.3% (142)

9.8% (105)

44.3% (473)

13.2% (141)

AC→T (n=1050)

9.5% (100)

6.6% (69)

3.3% (35)

34% (357)

5.5% (58)


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HERCEPTIN® [trastuzumab] Manufactured by: Genentech, Inc. A Member of the Roche Group 1 DNA Way South San Francisco, CA 94080-4990 Initial US Approval: September 1998 Revision Date: October 29, 2010 Herceptin® is a registered trademark of Genentech, Inc. HER0000097200 © 2010 Genentech, Inc.


JONS_November 2011_FINAL_JONS_November 2011 11/17/11 11:31 AM Page 8

PUBLISHING STAFF SENIOR VICE PRESIDENT, SALES & MARKETING

Philip Pawelko phil@greenhillhc.com PUBLISHER

John W. Hennessy john@greenhillhc.com EDITORIAL DIRECTOR

Kristin Siyahian kristin@greenhillhc.com MANAGING EDITOR

Jim Scelfo Jim@greenhillhc.com

TABLE OF CONTENTS

NOVEMBER 2011 • VOL 2, NO 6

SENIOR COPY EDITOR

BJ Hansen CONTRIBUTING AUTHOR

Stefanie Beeman PRODUCTION MANAGER

Stephanie Laudien QUALITY CONTROL DIRECTOR

Barbara Marino BUSINESS MANAGER

Blanche Marchitto CIRCULATION DEPARTMENT

circulation@greenhillhc.com Journal of Oncology Navigation & Survivorship, ISSN applied for; (online) is published 6 times a year by Green Hill Healthcare Communications, LLC, 241 Forsgate Drive, Suite 205C, Monroe Twp, NJ 08831. Telephone: 732.656.7935. Fax: 732.656.7938. Copyright ©2011 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 EDITORIAL DIRECTOR, Journal of Oncology Navigation & Survivorship (JONS), 241 Forsgate Drive, Suite 205C, Monroe Twp, NJ 08831. E-mail: jim@greenhillhc.com. YEARLY SUBSCRIPTION RATES: United States and possessions: individuals, $50.00; institutions, $90.00; single issues, $5.00. Orders will be billed at individual rate until proof of status is confirmed. Prices are subject to change without notice. Correspondence regarding permission to reprint all or part of any article published in this journal should be addressed to REPRINT PERMISSIONS DEPARTMENT, Green Hill Healthcare Communications, LLC, 241 Forsgate Drive, Suite 205C, Monroe Twp, NJ 08831. The ideas and opinions expressed in JONS do not necessarily reflect those of the editorial board, the editorial director, or the publisher. Publication of an advertisement or other product mention in JONS should not be construed as an endorsement of the product or the manufacturer’s claims. Readers are encouraged to contact the manufacturer with questions about the features or limitations of the products mentioned. Neither the editorial board nor the publisher assumes any responsibility for any injury and/or damage to persons or property arising out of or related to any use of the material contained in this periodical. The reader is advised to check the appropriate medical literature and the product information currently provided by the manufacturer of each drug to be administered to verify the dosage, the method and duration of administration, or contraindications. It is the responsibility of the treating physician or other healthcare professional, relying on independent experience and knowledge of the patient, to determine drug dosages and the best treatment for the patient. Every effort has been made to check generic and trade names, and to verify dosages. The ultimate responsibility, however, lies with the prescribing physician. Please convey any errors to the editorial director.

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NOVEMBER 2011 • VOLUME 2, ISSUE 6

AONN CONFERENCE HIGHLIGHTS

12 26 28 30 34

Navigation and Survivorship General Sessions A View from San Antonio Keynote Speakers Conference Abstracts Breakout Sessions: Summaries and Take-Home Messages

GUIDELINES 38 Lung Screening Guidelines Published by NCCN By Pam Matten, RN, BSN, OCN

VIEWPOINT 39 It’s (Supposed to Be) a Wonderful Life: A Case Study Demonstrating the Positive Impact of Survivorship Care By Lillie D. Shockney, RN, BS, MAS

THE RX SHORTAGES 42 The Bush-Obama RX Shortages: Critical Cancer Drugs Are in Short Supply Thanks to Price Controls

CORRECTION In the September issue of JONS, we misprinted Ms Karyl Blaseg’s affiliation on her abstract submission. Ms Blaseg is from Billings Clinic Cancer Center, Billings, Montana. Our sincere apologies to Ms Blaseg for the mistake.

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LETTERS FROM LILLIE

Editor-in-Chief Lillie D. Shockney, RN, BS, MAS University Distinguished Service Associate Professor of Breast Cancer Depts of Surgery and Oncology Administrative Director, Johns Hopkins Breast Clinical Programs Administrative Director, Johns Hopkins Cancer Survivorship Programs Associate Professor, JHU School of Medicine, Depts of Surgery & Gynecology and Obstetrics Associate Professor, JHU School of Nursing shockli@jhmi.edu

A SEASON OF GRATITUDE

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

Prostate Cancer Frank delaRama, RN, MS, AOCNS Clinical Nurse Specialist Oncology/Genomics Cancer Care Clinic Palo Alto Medical Foundation

Healthcare Disparities Linda Fleisher, PhD, MPH

Assistant Vice President Office of Health Communications & Health Disparities Assistant Professor Cancer Prevention & Control Fox Chase Cancer Center

Health Promotion and Outreach Iyaad Majed Hasan, MSN, FNP Director and Nurse Practitioner Survivorship Clinic and Program Cleveland Clinic Taussig Cancer Center

AONN Research Committee Elaine Sein, RN, BSN, OCN, CBCN Senior Project Manager Fox Chase Cancer Center Partners

Dear Colleague,

E

ach year, we take time to acknowlAnd for this opportunity edge the things for which we are most grateful. Of course, family and to connect with others health immediately come to mind, but there are also several things in my profes- in this field, I am truly sional life for which I am grateful. In grateful. September we hosted the Second Annual Navigation and Survivorship Conference, the official national meeting of the Academy of Oncology Nurse Navigators (AONN). At this meeting, more than 400 nurse and patient navigators gathered to discuss the changing landscape of patient navigation and survivorship care for patients with cancer and to define ways to further develop the profession. Over the 3 days of the conference, attendees were able to make new connections with members in their field, share best practices, and learn from each others’ experiences. It is this sort of exchange that has tremendous impact on our ability to better care for our patients. And for this opportunity to connect with others in this field, I am truly grateful. In this issue, we are proud to present the proceedings from the meeting and hope the information presented is beneficial to your practice. On behalf of all of us at AONN and the Journal of Oncology Navigation & Survivorship, I wish you all a wonderful holiday season and all the best in 2012.

Marcy Poletti, RN, MSN

Program Administrator, Oncology Services Wake Forest University Baptist Medical Center

Penny Widmaier, RN, MSN Nurse Navigator Botsford Cancer Center

With best regards,

Executive Director, AONN Sean T. Walsh sean@AONNonline.org

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.

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NOVEMBER 2011 • VOLUME 2, ISSUE 6

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

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AONN CONFERENCE PROCEEDINGS

Assessing the Needs of Your Navigation Program Will Help to Achieve Goals

“P

atients come first” is the mission of the navigation program set forth by Tricia Strusowski, MS, RN, director of cancer care management at Helen F. Graham Cancer Center, Christiana Care Health System in Newark, Delaware. A successful navigation program utilizes many tools to assess patient needs, resources, and treatment plans and to create navigator job responsibilities. “We use a preassessment tool to list goals of the navigation program, including goals for administration, patients, families, navigators, and physicians,” Strusowski said. “We also need to know the barriers and the challenges to the program such as tumor types to be covered and the timeline for implementation.” Preassessment also entails choosing a navigator and resources, including dietitians, social workers, financial counselors, and hospice services. Also of importance is a relationship with community patient support agencies. “We partnered like crazy with the community,” Strusowski said. “We did not reinvent the wheel though. We had the wellness community, educational programs, and the American Cancer Society.”

Tricia Strusowski, MS, RN

Sharon Gentry, RN, MSN, AOCN, CBCN

12

COMMUNITY OUTREACH PROGRAMS George Washington Cancer Institute in Washington, DC, has developed the DC Citywide Patient Navigation Research Program to help patients who have problems with language, finances, and transportation. “The citywide network crosses seven healthcare institutions and is made up of lay navigators, nurses, and social workers,” said Sharon Gentry, RN, MSN, AOCN, CBCN, a breast health navigator at Derrick L. Davis Forsyth Regional Cancer Center in Winston-Salem, North Carolina. “They’ve come to form a web across the city to help people get care, so it’s been incredible to watch this develop.” Another program at the University of Medicine and Dentistry of New Jersey was led by a primary care physician who kept hearing horror stories of Latinos trying to navigate through the healthcare system for colon cancer screening, she said.

NOVEMBER 2011 • VOLUME 2, ISSUE 6

The navigators, who understood the culture and addressed the inherent community barriers, developed a resource guide with the patients’ input that could be used by navigators and care providers in the community. The focus became early cancer detection for this population, and the program, with the help of area churches and community organizations, bridged the gap between the community and the healthcare system.

RESPONSIBILITIES AND TREATMENT PLANS Everyone’s job, first and foremost, is patient care, Strusowski said. “You want to make sure that your job description really reflects what your navigator does. All the staff members in my department have very specific job descriptions. You have to be efficient and get the patients to the services they need as soon as possible,” she said. “When patients arrive at the multidisciplinary center, we need to know the preliminary treatment plan. We also want to list their lead physician, so that physician takes ownership and does a comprehensive assessment.” From the beginning of the program, Strusowski said she knew they would have to track and keep reports. Documenting patient and physician satisfaction is important, and the program’s basic tracking tool, with a patient identifier and date and time of appointment, has raised the level of care. “My nurses are all cross-trained,” she said. “Nothing will fall through the cracks because we have order sets. I use my clerks to their fullest potential. Nurses need to do what nurses went to school for.” And using the Midas computer system has helped with reporting to administration. “I can pull the very specific coordination of appointments that we’ve done. I send these tools to administration so they can see what we’re up to,” Strusowski said. The final tool in Strusowski’s arsenal is a patient navigation satisfaction survey that is distributed in the private doctors’ offices. “We keep it really simple, and it’s going to be a 1 to 5 scale. ‘Was your nurse navigator friendly? Did she answer your questions in a manner you

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AONN CONFERENCE PROCEEDINGS

could understand? Did she help you understand your course of treatment?’ From this, I’ll be able to give feedback to my nurse navigators and my support services because they deserve that,” Strusowski said.

SURVIVORSHIP CARE PLANNING According to the National Cancer Institute, a person is a survivor from the time of diagnosis until the end of life. “But I think it’s critical that we need to hear that the survivor not only includes the patient. It includes family, friends, and caregivers. Everyone is affected,” Gentry said. Questions for survivorship needs assessment within a navigation program include the following: • How do you define cancer survivorship in your community? • How do patients within your practice obtain survivorship services? • What type of survivorship services do your patients currently utilize? • Do you have enough local resources?

Survivorship care planning is also detrimental, Gentry said. Patients need help with some of the medical and physical effects of cancer treatment that may persist, including neuropathy, second primary tumors, infertility, and heart disease. Are the primary physicians in the community willing to take the patient back with some of these issues? Psychosocial concerns also may persist. Depression, fear of recurrence, and physical problems are all on patients’ minds. A navigation program can help survivors receive the care they need by: • Facilitating recommended surveillance for development of new cancers, and • Providing personalized support, such as educating survivors about their health needs and concerns and ensuring adherence to treatment and follow-up activities Gentry said that patients can look to the American Society of Clinical Oncology and the National Comprehensive Cancer Network for answers to lingering questions. g

Breaking Down Barriers to Care Can Ease Cancer Patients’ Burden

W

hen facing one of the most difficult challenges of their lives, many cancer patients and their families also have to deal with overwhelming barriers to care. Having a navigator to identify and remove those barriers can provide patients with the care they need and help to eliminate some of their burden. These common barriers to care and potential solutions to eliminate them were addressed by breast health navigator Sharon Gentry, RN, MSN, AOCN, CBCN.

IDENTIFYING BARRIERS Gentry outlined some of the types of barriers that nurse navigators commonly face: Cultural Barriers Cultural beliefs regarding treatment. Although nurse navigators excel at the clinical component of cancer care, Gentry said that to correctly interpret the cultural beliefs of specific populations, it is best to include a community navigator or lay navigator. Delay and refusal of care. According to Gentry,

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navigators will contend with people who refuse treatment, mostly because of fear. “It’s okay if they don’t want treatment as long as they’re making an informed decision; as long as you’ve tried to talk with them and explain to them the benefits they can gain from treatment,” she said. Bias. African-Americans as a whole receive fewer cardiovascular procedures, organ transplants, orthopedic surgeries, cesarean sections, and lung operations for cancer compared with Caucasians. “Is it access? Are we not getting that information out to them?” Gentry asked, and stated that “We have to think about our own biases that we may bring into the situation. And we hope they’re not there, but we have to be truly honest.” Language. In the United States, 1 in 5 people speaks a language other than English, and nonEnglish speakers have greater difficulty understanding information from their doctor’s office.

Geographic Barriers Transportation. Gentry said that one of the main topics of discussion by patients is transportation

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AONN CONFERENCE PROCEEDINGS

arrangements to and from appointments. Citing a study by Electra D. Paskett, PhD,1 Gentry said the 2 major barriers most navigators spend their time on are “insurance and out-of-pocket cost, and transportation.”

Socioeconomic Barriers Education. Nearly half of America’s adults are poor readers, or “functionally illiterate.” Gentry referred to a health literacy assessment test presented by E. Mullen at the Oncology Nursing Society’s 36th Annual Congress that can help improve communication.2 “This is a three-minute estimate of adult literacy on medicine. [Mullen] says we often overestimate the patient’s ability to understand medical information. This three-minute test could evaluate patients without embarrassing them.” Uninsured/Underinsured. Citing a report from the Institute of Medicine, “Too Little, Too Late,” Gentry stated that uninsured patients receive one-half the healthcare of insured patients, and that the uninsured die sooner than insured patients because of delayed diagnosis.

“...uninsured patients receive one-half the healthcare of insured patients, and the uninsured die sooner than insured patients because of delayed diagnosis.” POTENTIAL SOLUTIONS AND RESOURCES Gentry hopes that the Patient Protection and Affordable Care Act will be part of the answer to breaking down barriers to care, but she’s not certain that this will be the case. “The goal is to prioritize healthcare. It’s going to make it more affordable, it’s going to make it more accessible, and it’s going to make it accountable,” while promising to tackle disparities, said Gentry. She focused on what the bill would do for navigators and how they will most likely interact with it. “It says it’s going to contain several provisions to improve healthcare access for racial and ethnic minorities and underserved populations. So number one, pay attention to what your census is telling you about what is going on in your community,” Gentry said. “They’re going to have planning grants to states to facilitate promotion of medical homes

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for Medicaid enrollees with chronic conditions,” she said, adding that they will fund communitybased interdisciplinary teams to provide support to primary care practices and also fund consortiums of healthcare providers to coordinate and integrate healthcare services for low-income, uninsured, and underinsured populations. “These resources will contribute to the existing care continuum; you are part of that now-existing care continuum so hopefully this is going to open some funds for you.” Gentry hopes that the bill will allow for more comprehensive case management, more care coordination, more health promotion, transitional care, patient and family support, and referral to community sources. Until that happens, Gentry is focusing on ways to help those in need right now. She compiled a list of resources for navigators that they can refer to: • Cancer Care. www.cancercare.org. Offers financial assistance, grants, counseling, and support groups. • Georgia Cancer Coalition. www.georgia cancer.org. “There are usually programs in your state that you might know about,” Gentry said, such as providing free cell phone access for patients. • NeedyMeds. NeedyMeds.org. Provides information on patient assistance programs. • Partnership for Prescription Assistance. www.pparx.org. Helps qualifying patients without prescription drug coverage. • Patient Advocate Foundation. www.patient advocate.org. Provides patients with arbitration, mediation, and negotiation to healthrelated issues. • Mautner Project. www.mautnerproject.org. Support organization for lesbians with cancer and their loved ones. • The Tigerlily Foundation. www.tigerlily foundation.org. Focuses on young women who have breast cancer. • Joe’s House. www.joeshouse.org. A lodging resource for cancer patients. g

REFERENCES 1. 2.

Paskett ED, Harrop JP, Wells KJ. Patient navigation: an update on the state of the science. CA Cancer J Clin. 2011;61:237-249. Mullen E. Assessing health literacy of elderly cancer patients in clinical practice: what clinicians need to know. Oncology Nursing Society 36th Annual Congress; April 2011; Boston, MA. Poster 434.

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Patient Navigation Across the Continuum

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collaborative approach to patient navigation that involves both clinical and community navigators can ensure that the final navigation program reflects the needs of your particular institution, according to Linda Fleisher, PhD, MPH, assistant vice president of Health Communications and Health Disparities at Fox Chase Cancer Center, Philadelphia. Navigation is both a noun and a verb, she said. “Ask yourself, ‘Whose role is it?’ But also ask yourself, ‘What are we trying to accomplish?’” At Fox Chase, Fleisher and her colleague, Bonnie J. Miller, RN, BSN, OCN, FAAMA, administrative director of the Women’s Cancer Center, have taken a collaborative approach to patient navigation by bringing together the community side and clinical side in a comprehensive fashion. “Many of us at Fox Chase want to have a more comprehensive, systematic approach to patient navigation,” Fleisher said. “One size does not fit all. There are a lot of best practices and standards for navigation programs, but the program at your institution needs to be designed to fit your needs.”

STEERING COMMITTEE In her quest to get navigation programs off the ground, Miller said she has learned many lessons over the past few years. A key accomplishment was developing a navigation steering committee, which she chairs. “I really believe that navigation is not just in the clinical setting. And that’s where I feel like Linda and I bridge that gap,” said Miller, who is also a cancer survivor. “She’s doing a lot of work in the community setting, and I’m doing it in the clinical setting. And there’s a pass-off back and forth.” The navigation steering committee has 3 goals: consistency in the messaging about navigation, communication, and collaboration. Miller said their navigation program is very disease specific. They began with a breast cancer program and have added head and neck, gynecology, and thoracic. They are launching a gastrointestinal program and an expanded gynecology program, and they have placed a navigator in the infusion room. “Each and every one of the navigators is part of the steering committee,” she said. “We are not making decisions, and we are not building a

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strategic plan unless the navigators are a part of the process.”

QUALITATIVE MEASURING “My responsibility as the administrator is to make sure that I’m collecting data, measuring, and sustaining the program,” Miller said. “My role is to make sure that I’m pushing out the information to physician champions, senior leadership, and the board so that navigation becomes a part of their verbiage and they understand what we’re doing. I can’t tell you enough that it’s very, very important to data capture.” Equally important is finding a database that makes sense for your institution. Included in the database are the patients, their demographics, contact information, insurance, and next of kin. “We’ve been able to take the time and effort in our database and our data entry from about 40% to 50% now down to about 15% to 20%,” Miller said. It’s also important to have effective internal and external marketing, including physician champions, presentations to the management team, a Web site, and commercial and print materials. “By adding patient navigation, our retention rate on an average, across the disease sites, is somewhere around 66% to 68%,” Miller said. She added that the next steps in their program include the following: • Expand navigators’ role in research • Develop and conduct systematic patient satisfaction and impact evaluation • Expand navigators’ role in service line design • Continue education about the role and scope of navigation “I would suggest that you communicate with your administration and that you build something that is going to help sustain your program,” Miller said. “I really believe that navigation is ever-changing, ever-evolving, and always patient-focused.” COMMUNITY OUTREACH PROGRAMS Community outreach at Fox Chase starts with a program called the Office of Health Communications and Health Disparities, which includes community cancer education in multiple languages and community screening. And its Resource Education Center, for both navigators and patients, work hand-in-hand.

Linda Fleisher, PhD, MPH

Bonnie J. Miller, RN, BSN, OCN, FAAMA

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“Community navigators are different from the clinical navigators,” Fleisher said. “These are seasoned health educators who have extensive community work and cancer background. Their role is really to ensure follow-up care. They are helping with appointments, transportation, and referrals to support services.” Fox Chase’s Mobile Mammography Navigation is a pilot program that focuses on the underserved population. Women who participate and have an abnormal finding are contacted by a navigator, who then assesses and addresses barriers to follow-up care. The navigator then provides support to return to Fox Chase or another appropriate facility for follow-up. “We looked at 29 women who were uninsured. Many of them needed additional tests,” Fleisher said. “One of those women was diagnosed with breast cancer, and we’ve been able to

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get her insurance. She’s being treated at Fox Chase. To me, this is the success. I do not want to be screening in the community and not have ways to get people to receive quality care.” A separate service called Project REACH is a pilot for the community-based prostate risk assessment program and is geared toward high-risk men. Community partners provide a screening location for the mobile van, which provides full services, including digital rectal examination, PSA screening, and education. “So far, we’ve screened 12 men,” Fleisher said. “Like the mammography program, the navigators are present at the screenings, they address barriers, follow all men with an abnormal result, and work with financial services.” She said that plans for community navigation include identifying more opportunities for funding and seeking IRB approval to conduct quality improvement and outcomes analyses. g

E AT D E

Third Annual Navigation and Survivorship Conference September 14-16, 2012 • Phoenix, Arizona

www.AONNonline.org/conference/2012

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Helping Survivors Navigate Their Way to Better Health Post Cancer

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he number of US cancer survivors hovers around 12 million today and is projected to grow to 20-million-plus by 2020, creating a critical need for focused patient navigation–oriented strategies for said survivors. To better understand how to address survivorship, it is imperative to understand terms such as “patient navigation,” defined by the Commission on Cancer (CoC) as “individualized assistance offered to patients, their families and caregivers, to help overcome barriers to care, whether through the healthcare system or the environment, and also to facilitate timely access to care from diagnosis through all phases of the cancer experience,” said Mandi Pratt-Chapman, MA, associate director for community programs for the George Washington (GW) Cancer Institute, Washington, DC. This individualized assistance is necessary for the reported 62% of adults diagnosed with cancer who now live more than 5 years and the 75% of children with a cancer diagnosis who live beyond 10 years, according to Pratt-Chapman. “There are a growing number of patients in the system and a fragmented system that they’re trying to navigate,” Pratt-Chapman says. “Despite advances that the numbers of survivors represent, along with better treatments and diagnoses, many individuals still slip through the cracks. As a result, there is higher cancer incidence, mortality, and lower survival rates among certain populations.” Hence, the birth of navigation. While defining patient navigation is clearcut, defining survivorship is a bit murkier – and more individualized, she said. Officially, the National Coalition for Cancer Survivorship defines survivorship from the point of diagnosis and through the balance of life. Polls and surveys from the American Cancer Society and LIVESTRONG Foundation have found that survivors have increasing expectations for good quality of life, longer life, and a need to address effects that occur after treatment ends. With such definitions in mind, Pratt-Chapman shared goals of the National Cancer Survivorship Resource Center, which is a collaboration between the American Cancer Society and GW Cancer Institute: identify gaps in information

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content and delivery channels for survivors and assess the nationwide surveillance system capacity to longitudinally monitor cancer survivor outcomes. The center provides direct survivorship navigation and support as well as training around survivorship for patient navigators. Pratt-Chapman also addressed an overview of standards relevant to the survivorship discussion. The CoC patient navigation standard requires that each institution accredited by the CoC conduct an assessment of barriers to care for cancer patients. It has to include all cancer types in the needs assessment. The Cancer Committee needs to evaluate and report on the progress of the program annually, and that report needs to address health disparities identified, navigation process, populations served, barriers identified, and metrics used to track your program.

EXAMPLE OF A SURVIVORSHIP CLINIC Putting those standards into practice in clinic form, Chi H. Kim, MD, an internal medicine physician and GW associate professor of medicine, discussed the cancer survivorship clinic at the GW Medical Center. She was appointed to initially help launch and navigate the cancer survivorship clinic, called the “Thriving After Cancer” program, which involves suborganizations of the GW Medical Center such as the GWU Hospital and the Medical Faculty Associates, along with the GW Cancer Institute. The clinic can provide screening, diagnosis, and treatment of cancers, psychosocial aspects of patient cancer needs, and can address cancer survivorship. It features a multidisciplinary survivorship clinic approach with a nurse practitioner, an internal medicine physician, along with a pediatric oncologist. There’s a patient navigator (social worker), mental health assessment provided by Lorenzo Norris, MD, and residents, a dietitian, and a nutritionist. There’s also an exercise program called “TAC Fit,” where patients receive a personalized fitness assessment and goals. “We wanted to really improve the follow-up of these patients, since a lot of them were lost to follow-up care,” she said. “The survivorship care plan was a really key component. At GWU, we have a two-page survivorship care plan detailing

Mandi Pratt-Chapman, MA

Chi H. Kim, MD

Lorenzo Norris, MD

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diagnosis, what age, actual dates, surgeries, chemotherapies, including their dosages, etc, as well as follow-up care.” “It empowers the patient so they know what they need to pursue, but furthermore, they can provide this to their future physicians or their primary care doctors who can also help them to navigate and screen through these late effects for the rest of their lives,” Dr Kim said.

“While defining patient navigation is clear-cut, defining survivorship is a bit murkier – and more individualized,”said Pratt-Chapman. Prior to the patient coming to the clinic, Dr Kim and colleagues do what is called a huddle. “[Everyone] gets together and we actually sit down and talk about each patient, and point out their unique history, what their medical needs are,” she says. “Then we can talk about our game for each patient.” Before the patient leaves, the navigator provides the patient with the survivorship care plan, as well as a packet about just survivorship resources, not to mention a future follow-up with the patient to encourage compliance. One of the challenges or threats to such survivorship plans is the financial return on investment, which, according to Dr Kim, may be little to none. “It may not be sufficient to cover our program costs, but again, we need to look beyond the financial and see the clinical need.”

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Dr Norris, director of consult liaison psychiatry at GW, worked with Pratt-Chapman and others at Medical Faculty Associates in setting up a psychosocial service for cancer survivors. To have a successful program, “Ultimately, you’re trying to change the culture. We’re trying to implement a new paradigm of cancer as a chronic disease that is treatable,” said Dr Norris. Consider developing a 5-year plan with a concise mission statement. “The mission statement will put the boundaries on what it is that you are trying to do. It should be unique to whom you are, the resources that you have in place,” he said. Program goals must be developed. In GW’s case, the goals were to improve survivorship posttreatment quality of life, provide psychiatric support to all GW survivorship programs, train and teach residents, and increase collaboration between various providers of survivorship care. “Once you’ve started to get an idea of your own strengths, your own capacity, then you have to consider the needs assessment,” Dr Norris said. You can use standardized questionnaire, poll patients, or spend a day or two with an oncologist or a support group from a survivorship perspective. After the needs assessment, determine an effective way to reach highest risk populations. “We had to figure out a way to get less fragmentation, more support in treatment for high-risk. We had to make it easier for clinicians to access us 24/7 if we had a patient that was suicidal,” he said. Next, the market assessment, through targeted tactics, helps carry out your goals. In GW’s case, they use strategies such as acute crisis intervention, time-limited focus (8 sessions), focused pharmacotherapy, building and sustaining relationships, management of psychiatric needs, risk stratification (survivorship care plan), and referral to a social worker or navigator-led support group. The support group touches on a need of many survivors – distress. “Most distress only needs guidance. Distress gives you a common language in which to talk to clinicians about the psychosocial needs of patients,” he said. “If you set it up correctly, distress leads to referrals.” Lastly, when setting up such survivor-focused services, Dr Norris emphasizes, “Do not start these services if you are working alone in asylum. This level of extensive service, you have to have some type of coronation of working with someone. Also, be very patient, very, very patient.” g

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Psychosocial Distress Screening via Easy-to-Use Technology Started at Lurie Cancer Center

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pilot study conducted at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, Chicago, demonstrated that psychosocial distress screening can be made patient friendly while measuring levels of distress that warrant follow-up. Psychosocial distress has received increasing attention from organizations such as the Institute of Medicine, which described the importance of distress screening and noted that psychosocial health really is a critical component to quality cancer care, said Nan Rothrock, PhD, Department of Medical Social Services at Northwestern. According to the National Comprehensive Cancer Network (NCCN), distress is a multifactorial unpleasant emotional experience of a psychological cognitive, behavioral, emotional, social, and/or spiritual nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. The NCCN recommends that distress be recognized, monitored, documented, and treated promptly at all stages of the disease and in all settings.

COMMISSION ON CANCER SETS REQUIREMENTS FOR MONITORING DISTRESS The 2012 Cancer Program Standards from the American College of Surgeons Commission on Cancer (CoC) states that for accreditation for a comprehensive cancer center, the cancer committee needs to develop and implement a process to monitor psychosocial distress and refer based on a patient’s report of psychosocial distress. The CoC requires that screening must occur at a minimum of once per “pivotal medical visit.” “That could be at diagnosis, transitions in treatment, perhaps from first-line to a second-line chemo, perhaps from radiation to chemo, or transitions off treatment, or transition from curative treatment to palliative care,” said Rothrock. The second requirement was that the program determines the mode of assessment. “The program can determine what’s feasible and what would integrate with existing work practices at their site,” she said. The CoC also stated a preference for standardized, validated tools with established cut points.

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Once screened, the CoC says that moderate or severe distress warrants follow-up. The clinician should “identify and examine the psychological, behavioral, and social problems of patients that interfere with their ability to participate fully in their healthcare and manage their illness and its consequences.”

“PROMIS also has cut points established by a panel of clinical experts, with limits that define normal, mild, moderate, and severe symptomatology.” “After having a screening measure identify distress, follow up to find out what’s the source of that distress,” said Rothrock. “Is this person having trouble with child care, with financial issues, with profound depressive symptoms, sleep problems?” The potential barriers to meeting these requirements are 3-fold, said Rothrock: • How should distress be measured? • How does one determine the level of distress that warrants follow-up? • How does one get the information to someone who can do something about it? Many distress measures exist, such as the Distress Thermometer, Hospital Anxiety and Depression Scale (HADS), and the Patient Health Questionnaire (PHQ)-9. The single-item Distress Thermometer is quick and easy but not always sufficient because it lacks sensitivity and specificity, she said. The ideal tool is one that is brief and precise and covers relevant issues in cancer. A computer adaptive test (CAT) is an example of a tool that is both brief and comprehensive, she said. A CAT is a collection of questions about a construct using the principle that a range exists within a continuum of each construct. For example, a physical functioning item bank can range from being bedbound to being able to run 5 miles. The CAT estimates a score based on the patient’s answer to the first question, and based on that score, it will select the next best item. A patient who answers that she has difficulty

Nan Rothrock, PhD

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walking from one room to another might next be asked if she is able to stand without losing her balance. The CAT ignores questions higher on the physical functioning construct, such as being able to run 5 miles. The score is recalculated after each answer.

PROMIS: ITEM BANK FOR PATIENTREPORTED OUTCOMES The Patient-Reported Outcome Measurement Information System (PROMIS) is a publicly available Web-based resource that can be used to measure key health symptoms and cancer-relevant domains (ie, pain, depression, physical function, perceived cognitive function). It is funded by the National Institutes of Health. PROMIS measures can be used in a variety of ways, said Rothrock. “It has invested in software so that you can administer CATs to patients,” she said. “CATs are a really great idea, but if there’s no way to get a CAT in front of a patient easily it will never be used.” PROMIS also has cut points established by a panel of clinical experts, with limits that define normal, mild, moderate, and severe symptomatology.

“Patients also agreed that the questions were meaningful and that the results were important for the medical team to know, although they weren’t certain that it would result in better medical care. None thought the survey took too long.” INTEGRATION INTO HEALTH RECORD Integrating the information into the electronic health record (EHR) was important “to get the information to the right people,” she said, as the EHR is part of the existing workflow. “Smart” messaging – getting the message to the appropriate clinician (ie, social worker vs oncologist) – was another key component. Distress screening at the Lurie Cancer Center uses a workflow in which patients access the patient portal, called “Epic MyChart.” Once in the chart, patients are seamlessly navigated to the Assessment Center. “In the Assessment Center, we have created a survey of PROMIS measures. That information is

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automatically scored and then pushed back into Epic. And the information is located under the ‘Other Orders’ section of Epic,” she said. The appropriate clinician then receives an in-basket message with the results; a score in the “severe” category or a patient who identifies a need warrants a message. The assessment measures chosen at Lurie are PROMIS CATs, such as depression, anxiety, fatigue, pain interference, physical function, social work needs, informational needs, and nutritional status. Patients who come to the clinic are given an iPad in the waiting room. The patient completes the assessment on the touch screen. A screening triage algorithm indicates the appropriate clinician for a message. “If a patient has a severe score in pain, fatigue, or physical function, his MDR and his clinical team gets an inbox message indicating a severe score,” said Rothrock. “If that patient has a severe score in anxiety or depression, his MDR and care team is still messaged, but we also send a message to our psychosocial service asking it to initiate a consult. And then for those practical questions about needing more information about a given topic, we send those to a social worker or the nutritionist, again asking to initiate the consult.”

PILOT PROGRAM SUCCESSFUL A pilot test was conducted to gauge the usability and administration of the assessment via an iPad. The first pilot tested the usability of an iPad in 12 gynecologic oncology patients. The assessment consisted of 40 questions that took about 10 minutes to complete. All 12 patients said that they would complete the assessment at every visit. Twenty percent required some form of assistance, most often technology assistance with the iPad or Internet connectivity. The second pilot was a measurement of realtime workflow in the clinic. Eleven patients took part. It took a mean of 1.6 minutes for the registration staff to distribute the iPad and check the patient in. The average time to complete the assessment was 10.7 minutes. Sixty-four percent were able to complete it in the waiting room; 27% finished it in the examination room. Eighteen percent required technology assistance (Internet connectivity). The patients indicated that the iPad was easy to use, and none thought the questions to be inappropriate. Patients found the questions easy

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to understand and mostly agreed that the survey asked questions about aspects of health and wellbeing that were important to the patient. Patients also agreed that the questions were meaningful and that the results were important for the medical team to know, although they weren’t certain that it would result in better medical care. None of the patients thought the survey took too long to complete. When asked if they would prefer to complete the surveys at home or in the clinic, 5 patients indicated no preference, 4 chose the home, and 1 chose the clinic.

LESSONS LEARNED “We learned that integration of software systems takes longer than you think it should,” said Rothrock. “Part of the reason was that we had to get different groups – clinicians, patients, operations staff, and software teams – to all meet at

the same time to agree what a shared goal would be. All of those groups have competing demands on their time.” “The second issue was that all of these groups have their own language and their own culture,” she said. “I don’t think I understood anything that the software folks said for the first couple of meetings. We had to spend some time getting rid of acronyms and trying to talk in layperson’s terms, while still representing the complexity of everyone’s field.” The other take-home lesson is that patients are not as scared of technology as some may think, she said. With that said, an easy-to-use design and a simple interface are crucial. “Our next step is to implement this kind of screening for all new patients who are receiving treatment,” she said. “We need to set up a schedule for follow-up assessments so we can monitor distress over time.” g

Survivorship Programs Seek to Ease Transition Back to Primary Care

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s a result of early detection and advances in treatment, there are more than 12 million cancer survivors in the United States today, and that number will continue to grow. While this is a cause for celebration, it also highlights the increasing need for programs to address the challenges survivors face and provide them with the best quality of life. “There is an anticipatory distress that increases as patients near the end of their treatment, because now they’re not actively fighting their cancer by doing these treatments,” said Rachelle Portner, RN, BSN, BA. Portner is a survivorship nurse navigator at John Muir Cancer Institute in Walnut Creek, California, a community-based hospital with 2 campuses and 7 nurse navigators. Both Portner and her copresenter, Debra Hesse, survivorship program coordinator at St. Mary’s Regional Cancer Center in Grand Junction, Colorado, are cancer survivors and have developed survivorship programs for their organizations. Although the programs are structured differently, they share a common goal: to improve the lives of cancer survivors.

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A COMMUNITY-BASED HOSPITAL SYSTEM PROGRAM Portner’s posttreatment experience made her aware of the lack of support for cancer survivors. “The word ‘survivorship’ didn’t even exist in a clinical setting at that time. So I had to figure out how to do this for myself,” she said. Portner approached the administration in the cancer institute and said “I want to start a survivor program, and you need that.” They concurred. The pilot survivorship program Portner developed was influenced by 2 books, Patient to Cancer Survivor: Lost in Transition and Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Both of these reports resulted in the American College of Surgeons (ACoS) cancer program standards. The pilot allowed her to identify the best ways to address survivors’ needs, which she has incorporated into the current program along with the ACoS/Commission on Cancer standards for 2012. John Muir Cancer Institute’s survivorship program comprises the following: Goals and service: • Acknowledge that the end of treatment

Rachelle Portner, RN, BSN, BA

Debra Hesse

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can be a time of both physical and psychological challenges • Develop a program to decrease psychological distress and address physical and practical side effects of treatment • Support each patient in achieving the highest possible quality of life after treatment Program components: • Distress screening and follow-up. The institute elected to use a modified version of the NCCN distress thermometer. Portner explained that the “Distress Screening” title was modified when research showed that the word “distress” was viewed negatively by patients. It was replaced with “How Are You Doing Today?” According to Portner, radiation oncology nurses use the distress thermometer to screen patients when they first come into the clinic for their education simulation, and at the end of their treatment about 7 days before they’re finished. Patients whose screenings reveal clinical evidence of moderate or severe distress (level 4 or more on distress scale, as defined by NCCN guidelines) are evaluated by their oncology team (managing physician, nurse navigator, nurse, oncology social worker) and connected to the appropriate referral for care

“People didn’t know what survivorship was. I was always looking for the big boat that’s gone before me and kind of cleared the path so I didn’t have to reinvent the wheel, and it really wasn’t out there,” Hesse said. • Quality-of-life assessment. “I use that qualityof-life assessment to populate all the information and interventions that go into that care plan,” said Portner, adding that she and the patient will spend as much time as is needed to go through each intervention • Health promotion and wellness information. Available from the American Cancer Society • Community outreach and education. In cludes health fairs, screenings, and nursing survivorship education seminars

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A RURAL COMMUNITY CANCER CENTER SURVIVORSHIP PROGRAM St. Mary’s Regional Cancer Center is in Grand Junction, on the rural Western Slope of Colorado. In 2006, the hospital received a grant from the Lance Armstrong Foundation to establish and staff a cancer survivorship program in association with the LIVESTRONG Survivorship Center of Excellence Network. Five years prior, Debra Hesse was diagnosed with melanoma, which led her to become a volunteer in the Cancer Center. When the grant was received, Hesse became the survivorship program coordinator. Hesse said that when she became the coordinator, survivorship was a new concept. “People didn’t know what survivorship was. I was always looking for the big boat that’s gone before me and kind of cleared the path so I didn’t have to reinvent the wheel, and it really wasn’t out there.” It took Hesse 5 years, patience, and the 47 volunteers she supervises to develop the program and establish the Survivor Resource Center. St. Mary’s Regional Cancer Center core survivorship program components include: • Cancer survivor resource center. Provides free educational books and pamphlets, online research assistance, and audiovisual resources in both English and Spanish that address the medical, emotional, and practical challenges faced by cancer survivors. Also, the center provides a computer with Internet access for patients, a “book exchange” shelf, and free hats and scarves for those who have lost their hair • Support and education. Art therapy program, 10 support groups and classes, Canyons healing retreats • Community outreach program. Health fairs, skin cancer screening, community education talks St. Mary’s is working on transitioning into a nurse navigator model utilizing a distress scale to identify patients who are in need of additional services and are also working on the implementation of electronic medical records to include the data points of a treatment summary and care plan into their new software, according to Hesse. “We are trying to determine the best way to close the loop, so our patients can transition their care from their oncologist back to their primary care physician,” she said. g

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The Navigator Matrix

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t the second annual AONN Navigation and Survivorship Conference, Karyl Blaseg, RN, MSN, OCN, of the Billings Clinic Cancer Center; Tricia Strusowski, MS, RN, of the Helen F. Graham Cancer Center; and Jay R. Swanson, RN, BSN, OCN, of the Saint Elizabeth Cancer Institute presented The Navigator Matrix. Designed to assist in standardizing navigation programs, the matrix is a tool that can also help determine what can be done to meet the needs of patient populations. Blaseg, Strusowski, and Swanson presented the following 16 navigation program building blocks, each containing 5 levels of qualification. KEY STAKEHOLDERS are those individuals essential to making your program work (administration, navigators, staff, physicians, and specialty medical personnel). The operating levels of this aspect range from strictly administrative program support (Level 1) up to a navigation program that receives referrals from MDs, PCPs, or community partners (Level 5). The answer to growing a program’s key stakeholders, according to Swanson, is oftentimes the acquisition of a champion physician, or a “gatekeeper,” willing to connect a navigator to the patients. COMMUNITY PARTNERSHIPS are those entities that exist within and outside the navigation program that contribute to the support of the patient or are a referral source for the patient. According to Swanson, “You can’t exist within your own program if you’re not able to meet all of the needs of your patient. And that’s going to require a whole cadre of internal and external supporters that are going to be able to help you with that.” This building block includes partnerships with national groups (ie, NCI, ACS, Susan G. Komen, LIVESTRONG), state organizations, and local community partners. An ACUITY SYSTEM is a way to determine the appropriate level of care that each patient needs. This area of the program includes formal assessment tools, a well-defined referral process, and other proactive approaches so there are no gaps in patient services. QUALITY IMPROVEMENT, or METRICS AND REPORTING MEASURES, involves measuring program performance. In other words,

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using reports to establish the importance of the program so that others may see the benefits of navigators. At a Level 5 for this building block, a program would have multiple quality improvement initiatives in place and monitored to demonstrate program improvement, financial contribution, and cost-saving services. The MARKETING aspect of the navigation program matrix ranges from basic word-ofmouth program marketing (Level 1) to pamphlets (Level 2) to health fairs and other multiple media sources (Level 5). The process of getting the information out to the physicians’ and the surgeons’ offices so the patients come into the facility knowing there’s a navigator available for them is the sixth building block, PERCENTAGE OF PATIENTS OFFERED NAVIGATION. The seventh building block, CONTINUUM OF NAVIGATIONAL CARE includes outreach/screening, abnormal finding to diagnosis, treatment, outpatient and/or inpatient, survivorship, and end-of-life care. A Level 5 program provides patient navigation continuously across the cancer care continuum. The next navigation program building block is SUPPORT SERVICES available and used by the navigation team. These resources are numerous and include dietitians, social workers, psychologists, clinical trials, physical/occupational/ speech therapists, pastoral care, oncology rehab, financial counselors, palliative care, genetic counselors, etc. REPORTING STATISTICS involves documentation designed to evaluate and measure the navigation program. Levels within this matrix block range from paper patient charts (Level 1) to homegrown spreadsheets (Level 2) to formal hospital electronic medical records in which all support services provided to the patient are documented (Level 5). FINANCIAL ASSESSMENT of patients in the navigation program is almost as important as the physical assessment. The expenses for not only medical care and treatment but also the additional costs associated with the effects on life change are dramatic for patients. A Level 5 navigation program will have proactive financial assessment completed for all oncology patients plus data collection completed on types of serv-

Karyl Blaseg, RN, MSN, OCN

Jay R. Swanson, RN, BSN, OCN

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ices provided and number of patients assisted on a regular basis. A benchmark navigation program will FOCUS ON DISPARITIES. This entails providing outreach and effort to any underrepresented population in the community. Furthermore, this focus includes cancer cultural awareness among staff, with cultural objectives created on at least an annual basis. While maintaining a central core responsibility of patient assistance, NAVIGATOR RESPONSIBILITIES must grow as a program evolves. From Level 1, when the navigator is responsible only for the support of the patient to Level 5, when responsibilities expand to support groups, tumor conferences, audits, and strategic planning, the primary focus is always the patient. Another navigation program building block is the PATIENT IDENTIFICATION PROCESS. Navigators have to find a way to interact with their patients. This is the process of developing from a program that has to search for patients (Level 1) to a program receiving referrals from a PCP at the time of an abnormal finding (Level 5). To ensure a high quality of care and commitment, NAVIGATION TRAINING is essential to any program. This involves defining core competencies of navigation, local training for all

navigators, and finally, formal training and certification by nationally recognized programs. With clinical trials being a major part of the advancement of cancer care, it is important that navigation ENGAGE WITH CLINICAL TRIALS to offer patients the best possible care. A Level 5 program will have a trained navigator sharing trial information with patients, engaging with research teams, and assisting with specific trial referrals for underserved populations. The final navigator program building block is MULTIDISCIPLINARY CARE. This means the plan of care for the patient involves a multidisciplinary team approach including physicians and other healthcare providers. A benchmark navigator program includes the navigator and patient on the multidisciplinary team. The patient is informed of the case presentation, the patient receives a full report on the treatment plan discussion, and formal audits are completed. Programs throughout the country are already using the 16 building blocks of this tool as a means to establish the importance of the program and improve quality. In closing, Swanson encouraged those in attendance to use the matrix as a foundation to advance current programs and move forward with improvements in patient navigation. g

Compassionate Care Helps Drive Better Patient Outcomes

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Robb Johnson

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ignificantly high levels of physicians and other medical professionals believe that compassion in healthcare makes a significant difference on whether the patient lives or dies. And yet, of physicians who were polled not long ago, only a little more than half believed that the system is actually compassionate today. Robb Johnson, director of programs for the Schwartz Center for Compassionate Healthcare in Boston, addressed this poll and how it ties in with the compassion concept and the work of the center. Set up in 1995, the center carries out the vision of Ken Schwartz, a healthcare attorney who died of lung cancer at age 40, who suggested that what meant the most to him as a patient was the compassionate care he received from his caregivers. One notable program at the center is known as Schwartz center Rounds, a forum that allows professional caregivers from a diversity of disci-

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plines to get together to address difficult emotional and psychosocial issues pertaining to patient care and develop strategies for addressing challenging cases. “Caregivers can learn new strategies for treating patients more compassionately while providing support to one another and building stronger teams. This is really a provider-directed program for providers,” says Sean Walsh, the executive director of AONN. According to Walsh, it’s essentially a 1-hour program at lunchtime. The Schwartz Center basically provides a type of training orientation process for a hospital to undertake, and then they run the training program with a planning committee located within that facility. The training sessions run 6 to 12 times a year. It’s an interdisciplinary forum and is cross-disciplined; it creates an interactive discussion across

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disciplines. The program is focused on the psychosocial aspects, or the heart or emotional side of the work, not on clinical problem solving. Patients and families do not generally attend, but once a hospital or clinical setting has the Rounds running, they are encouraged to invite a patient or family group into a Round to actually share their story, so that can be kind of a crossfertilization of ideas, according to Walsh. On another front, the Schwartz Center recently began piloting a program with CRICO/ RMF (Controlled Risk Insurance Co/Risk Management Foundation), the insurance company for Harvard teaching hospitals. They are working with clinicians on a project in which all the cases that are used in case discussions are based on actual closed malpractice cases. And 70% of claims are actually based on breakdowns or problems in the communication between provider and caregiver, possibly situations that may lack in compassion. Robb Johnson, director of programs for the Schwartz Center, says that it is possible that the profession’s compassion can be impeded by a negative source of energy, burnout. He says one measure of burnout in healthcare provider populations is the Maslach Burnout Inventory, which considers various measures. One measure is emotional exhaustion, which essentially means you are at the point where it is becoming difficult to engage or to assert your needs with others. Another measure is depersonalization, which can be measured by negative pessimistic attitude, maybe hostility or hostile behavior toward your coworkers or toward your family, and a lack of a sense of personal achievement. “From my past direct work experiences with people with HIV and AIDS and with victims and survivors of violence, there were times when I felt like I had light shining out of my head and I thought, ‘I’m doing good work.’ And there were other times when I was so conscious that what I just said or what I just did fell flat or was the wrong thing at the wrong time,” Johnson says, relating to the depersonalization measure. He adds, “For me, the unfortunate part of my personality is I tend to remember the ones that didn’t go so well a lot longer than I remember the ones that went well. But we don’t need heroic performances all the time. It’s impossible to be on 100% or perfect all the time.” He suggests that what medical professions

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really need is to develop a system of coping strategies and support that will keep you going. Johnson queried his audience about times when they felt like they were heading toward burnout. He asked for audience members to share personal strategies used to help bring them back to where they could devote energy and enthusiasm to life or to work again.

“Caregivers can learn new strategies for treating patients more compassionately while providing support to one another and building stronger teams. This is really a providerdirected program for providers,” says Sean Walsh, the executive director of AONN. He asked a second question of the audience: “What are a couple of things at your workplace or perhaps your family system that your social system has done that have helped you cope and stay engaged and avoid burnout?” The first question is a personal strategy; the second one is a system support strategy. One audience member, Patty Grow, RN, MSN, FNP-C, family nurse practitioner and patient navigator from University of Texas Medical Branch at Galveston, works in the breast cancer area of the branch. At her facility, she says one of the strategies is to use prayer of some sort. “This is very quick and simple. We go into a room, and we hold hands, and we pray as a team. We can do the best thing for our patients if we take care of ourselves. Sometimes we pray with the patients as well. I’m also a survivor, and this is one strategy that works for us,” she says. According to Johnson, a significant evaluation of the compassionate care–based program was published in the Journal of Academic Medicine last June. “What we found was that people were coming away with concrete strategies for dealing with challenging situations, and they were feeling, at least by self-report, that they had an enhanced or renewed compassion for folks,” Johnson says. A high percentage reported a greater appreciation for what their colleagues do, and they felt more a part of a caregiving team. And a significant number reported feeling less alone in their work, according to Johnson. g

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Faces at the conFerence

A View From San Antonio Second Annual Navigation and Survivorship Conference

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Faces at the conFerence

Photos by JOWDY Photography

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AONN KeyNOte SpeAKerS

Inspiring Strong Survivorship Care ADVOCACY KEYNOTE healthcare administration from Saint Joseph’s Andy Miller, MHSE, CHES, Vice President of College and a master’s degree in Administrative Mission for LIVESTRONG, delivered the advoScience from the Johns Hopkins University. She cacy keynote address at our second annual is a founder of AONN and a published author of AONN Navigation and Survivorship Conference 13 books and over 200 articles on the subject of in September. Miller oversees LIVESTRONG’s breast cancer. strategic direction and daily operations of its programmatic activities, While a patient’s treatment summary is including grants and partnerships, direct services for those affected by valuable, Shockney says, it is just as cancer, and implementation of the important to discuss a patient’s care plan, foundation’s cancer policy platform. In his address, Miller discussed including the physical symptoms and how the organization’s mission is to “inspire and empower people affect- psychosocial issues she may encounter ed by cancer.” One of the key priori- along her journey. ties of this LIVESTRONG mission In her address, Shockney led conference attendis to assist cancer patients in navigating survivorees on a journey through some of her personal ship. For the foundation, this means providing experiences with breast cancer. The audience was free, confidential, one-on-one support to anyone held captivated by many heartwarming and often affected by cancer, be it the person who is diagentertaining stories of breast cancer survivors nosed, patients’ loved ones, or patient caregivers. Shockney has encountered throughout her life. Since 2004, LIVESTRONG has been providing Audience members also listened closely as navigation services that focus on emotional supShockney talked about her own breast cancer diagport; fertility risks and preservation options; nosis at the age of 38 and her subsequent mastecinsurance, employment, and financial concerns; tomies. Not only did Shockney discuss the impact and treatment concerns. In 2009, the foundation of cancer on her body physically, but she also opened the LIVESTRONG Cancer Navigation shared some of the emotional hurdles she cleared Center in Austin, Texas, where they continue to as a cancer patient and survivor. Included in her help people with any cancer type and at any stage story were those individuals who positively influof treatment. In fact, in 2010, the LIVEenced her treatment journey. STRONG organization assisted over 11,000 Today, Shockney considers it a privilege to individuals, provided more than 38,000 services, spend her time taking care of women who are and saved individuals more than $3 million by facing a breast cancer diagnosis. As a result, she negotiating discounts and providing funds. has been working diligently the past 3 years on In his closing remarks, Miller stated, “LIVEdeveloping a survivorship program in which STRONG is an organization that is not about navigators assist in meeting the emotional and cancer. It’s about people. It’s about people affectphysical needs of cancer survivors. For instance, ed by cancer.” In much the same way, AONN is while a patient’s treatment summary is valuable, not about cancer, but rather about people affectShockney says, it is just as important to discuss a ed by cancer as we strive to achieve our vision to patient’s care plan, including the physical symp“increase the role of and access to oncology nurse toms and psychosocial issues she may encounter and patient navigators, so that all cancer patients along her journey. Supplying steadfast support to may benefit from their guidance, insight, and perpatients throughout treatment is another crucial sonal advocacy.” component of a survivorship program. And, SURVIVORSHIP KEYNOTE when the treatments are complete, Shockney Our very own editor-in-chief, Lillie Shockney, believes it is the responsibility of navigators to delivered the survivorship keynote address. help survivors reengage in their lives both emoShockney is a registered nurse with a BS in tionally and physically. g

Andy Miller, MHSE, CHES

Lillie Shockney, RN, BS, MAS

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Journal of Oncology 速

NAVIGATION & SURVIVORSHIP

The Official Journal of the Academy of Oncology Nurse Navigators 速

Submita Manuscript! www.AONNonline.org/manuscripts

The ONLY journal focused on patient navigation and survivorship care in oncology patients " 2)/ $0! (2 +/!-.%)(- )/. .$! Journal of Oncology Navigation & Survivorship *'!-! )(. . ,%-.%( %2$%( . editorial@greenhillhc.com

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SECOND ANNUAL CONFERENCE ABSTRACTS The following abstracts were presented at the Second Annual Meeting of the Academy of Oncology Nurse Navigators.

CATEGORY III: Tracking Processes Across the Continuum of Care A Path to Improving the Continuum of Care: Developing a Survivorship Program A. Vance, RN; C. Copertino, RN, MS, OCN; S. O’Connor, RN, MSN, OCN; M. Willingham, CRNP Background: The path to a survivorship program includes key elements to ensure a successful and sustainable program. At Anne Arundel Medical Center (AAMC) we implemented these fundamentals in the development of our breast survivorship program. This abstract outlines fundamental steps in the process. Methods: First, a needs assessment was conducted using data from our tumor registry. We conducted a literature review including the Institute of Medicine’s report “Lost in Transition: From Cancer Patient to Cancer Survivor” and research from the NCI’s Office of Cancer Survivorship. Consistent with the nation, we found a growing volume of cancer survivors living longer and needing assistance. Training and networking were critical in the program development as well. AAMC staff attended George Washington’s Executive Training on Navigation and Survivorship. This 2-day seminar helped define a framework and featured organizations with operational survivorship clinics. Next, a project team was created and included a nurse practitioner, nurse navigator, administrative director, and medical oncologist. The project team defined the goals of the survivorship program, focusing on our commitment to support survivors as they progress through the continuum of care in the areas of health monitoring, disease prevention, and overall wellness. Another crucial step was to research possible funding sources, both internal and through grants. AAMC applied for a grant through the Susan G. Komen Foundation and was awarded a 1-year grant to assist with the implementation of our survivorship clinic. The breast survivorship clinic visit consists of a consultation with the nurse practitioner and oncology social worker. Patients receive a “Survivor Path” that serves as a care treatment summary, including diagnosis details, comorbidities, treatments, and providers. It is vital that this Survivor Path is provided to primary care providers and other professionals from the care team in order to provide seamless care. In addition to creating the program, we were tasked with marketing the program. Promotional materials were made available to patients in waiting rooms of oncology providers. “Lunch and Learn” sessions were coordinated to establish a dialogue with primary care offices. A presentation of the survivorship program was conducted for all disciplines at a “tumor board” conference to ensure an understanding across departments within the health system. Conclusion: Finally, it is necessary to provide ongoing assessment and evaluation to improve and expand the program. The ultimate success of the program will rely upon ongoing executive sponsorship, objective evaluation, sustainable funding, and most importantly, tangible patient benefits.

CATEGORY IV: Original Research Breast Nurse Navigator Role Impacts Cancer Patients and the Healthcare Team Loril Garrett, BSN, RN, OCN, CBPN-IC, CBCN; Geralyn Roobol, RN, BS, LMSW, CMAC Objectives: To evaluate the impact of the breast nurse navigator (BNN) role on the breast cancer population served, physicians, and the multidisciplinary team. Methods: The BNN met with patients who had a confirmed breast cancer diagnosis and followed them through treatment into survivorship. The BNN performed a needs-based assessment with each interaction resulting in individualized interventions throughout the care continuum. Satisfaction surveys were developed to measure service impact of the BNN program using a 5-point scale (5 highest, 1 lowest). All patients served (155) in the first 6 months of the program were surveyed. Patients rated the impact of the BNN role on addressing emotional needs, answering questions, providing explanations and education, helpfulness, availability of the BNN, and how well the BNN served as a point person for them. Members of the healthcare team also completed a satisfaction survey. They were queried about how well the BNN removed barriers to treatment, helped expedite appointments, coordinated care, involved the healthcare team, facilitated access to research, and provided patients with explanations about what to expect during their treatment. Open-ended questions were also part of the survey. Input was solicited from both patients and the members of the healthcare team on what was going well with the BNN role and if anything could be improved upon. Results: The patient satisfaction scores were overwhelmingly positive about the impact of the BNN role on their care. The overall patient rating was 4.73, with a 46.5% survey return response rate. The healthcare team scores were also very positive, with an overall score of 4.5 and a 47% survey return response rate. Multiple positive comments were received from both patients (50) and the healthcare team (17) on the BNN role. Conclusion: Breast cancer care, which is delivered by multiple providers over an extended period of time within an already fragmented healthcare system, has led to persistent gaps in the care process. The role of a BNN serves to bridge those gaps and assures that the quality of a patient’s care and experience is optimized in the process, which was demonstrated. Discussion: Increasing numbers of cancer treatment programs are employing the use of nurse navigators as a strategy to improve patient satisfaction, the efficiency of the care process, and adherence (NCONN, 2009). Breast cancer treatment and care can be improved by recognizing the value the nurse navigator role brings to the patient experience and enhancing that role (Korber et al, 2011).

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SECOND ANNUAL CONFERENCE ABSTRACTS

CATEGORY V: Screening Programs for the Underserved Streamlining Navigation for Urban and Rural Communities in Texas Melanie L. Senter, RN, OCN; Edna Munoz-Oden, RN; Maria Alarcon-Furman, RN, BSN; Brenda Epperson, RN, BSN; Rachel Reyes, CSA; Yesenia Ortiz; Paula R. Anderson, RN, MN, OCN Background: Tarrant, Denton, Wise, Parker, Hood, and Johnson counties have a higher incidence of invasive breast cancer than any other part of Texas. An estimated 55,000 women from these counties have never received breast cancer screening. Objectives: The Breast Screening and Patient Navigation (BSPAN) program developed in Tarrant County has been effectively duplicated in the surrounding, underserved counties. The program includes: (a) outreach and breast health education; (b) providing screening services within the patientâ&#x20AC;&#x2122;s home county; (c) oncology RN navigation of abnormal results to increase the speed to diagnosis and treatment, and (d) acquiring and maximizing funding to reduce financial barriers. Our program utilizes funds from Susan G. Komen Foundation, Cancer Prevention and Research Institute of Texas (CPRIT), Breast and Cervical Cancer Services (BCCS) as well as foundation funds. Methods: 1. Provide nurse-led breast health educational presentations throughout the rural communities; 2. Attain state BCCS Provider status providing funds for services; 3. Employ key personnel to expedite the Medicaid application for the breast and cervical cancer program; 4. Utilize mobile mammography units of UT Southwestern, Texas Health Harris Methodist Hospital Fort Worth, and local county imaging centers to provide local screening opportunities; 5. Centralize nurse navigation for all 6 counties; 6. Evaluate BSPANâ&#x20AC;&#x2122;s effectiveness tracking 3 outcomes over 12 months: a) Number of mammograms provided b) Time to clinical resolution or treatment of abnormal results c) Percent of early-stage versus late-stage cancers identified Results/Conclusion: Seven breast health programs have been presented throughout the targeted counties. A CPRIT grant to expand the program was awarded in June 2010, and BCCS Provider status from the State of Texas was achieved in July 2010. In 12 months, collaborations with mobile units, local clinics, hospitals, and imaging centers have generated 2338 screening mammograms resulting in 663 abnormal screenings. Additionally, 739 symptomatic women required navigation to additional imaging. Alarmingly, for 33% of symptomatic women, this screening was baseline. Average time from abnormal results to clinical resolution was 16 days. Breast cancer has been confirmed in 68 women, and 75% of the breast cancers were found at early stage. BSPAN provided services to underserved and medically disadvantaged counties in North Texas with minimal staff, including an OCN nurse manager, 3 oncology nurses, clinic staff assistant, and billing specialist. The BSPAN program has shown that statewide duplication is feasible with the strategic appropriation of funds and staff. Education for women in rural counties continues to be essential, as reflected in the high percentage waiting until symptoms to initiate mammography.

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SECOND ANNUAL CONFERENCE ABSTRACTS

CATEGORY V: Screening Programs for the Underserved From Breast Cancer Screening to Definitive Diagnosis: Strategies for Successfully Serving the Underserved Dawn Parsons, RN, OCN; Diana Phillips, MAHS; Joni Watson, MSN, RN, OCN Significance: Uninsured patients receive half the care of their insured counterparts, leading to poorer health outcomes as a result of delayed diagnoses. Breaks in cancer care impact survival rates and quality of life. The Seton Healthcare Family, the only NCI Community Cancer Centers Program (NCCCP) site in the Southwest, has provided breast cancer care spanning the full cancer continuum to low-income and uninsured women across Central Texas since 1987. Objectives: This presentation discusses Seton’s successful efforts to expand culturally appropriate breast cancer outreach to high-risk, diverse, and underserved women residing in Central Texas, focusing on factors supporting navigation of women with an abnormal screening result to definitive diagnosis in a timely manner with a lost-to-follow-up rate less than 1%. Methods: Seton’s mobile mammography program, with support from Komen for the Cure Austin and the National Breast Cancer Foundation, couples screening mammography with breast health education and clinical breast exam by specially trained RNs. By offering culturally appropriate, free breast services in partnership with respected community sites, Seton provides accessible services to underserved women in their communities. Women with abnormal results are navigated to definitive diagnosis by the same screening RN. Detailed protocols and breast diagnostics funding facilitate compliance with diagnostic testing. Multiple reminder efforts encourage yearly screening participation per national guidelines. Results: From April 1, 2010, to March 31, 2011, 1828 women were screened at 121 sites in 7 federally designated medically underserved counties, with 56% of participants Hispanic, 26% non-Hispanic Caucasian, 13% Asian, and 5% African-American. A total of 203 women had an abnormal result, and all were navigated to a definitive diagnosis. Grants covered costs of nearly 700 diagnostic procedures and more than 300 physician office visits. Women progressed from abnormality detection to definitive diagnosis in an average of 24 days. The program also averages a 38% screening return rate over the past 5 years. Conclusions: Seton’s breast cancer screening program is a community-centric initiative focused on long-term health behavior changes based on trust developed through community linkages, removal of financial barriers, effective processes, and consistent relationships between clients and skilled RN navigators. As a result of the success of the screening model, Seton has developed programs replicating that same model for other types of disease-specific screenings (cervical and skin) for high-risk underserved populations. Seton’s model has been shared with other NCCCP sites and is replicable by other organizations.

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contents Here

 

 

Nurse & Patient Navigator Association Best Practices A selection of member-submitted best practices for others to learn from and comment on.

Continuing Education Learn how to advance your understanding of the complexities of cancer care through our live, online, and printed educational activities.

Networking Opportunities Coordinated events throughout the year both in person and online to help you connect with members and leaders.

Community Resources A collection of resources to help you and your patients better navigate their cancer treatment.

Expert Opinion Blogs Thought-provoking articles from the leaders in navigation and survivorship on various subject areas.

Publications Subscriptions to the Journal of Oncology Navigation & Survivorship速 and The Oncology Nurse速-APN/PA.

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BREAKOUT SESSIONS

AONN Breakout Sessions

T

hose in attendance at the AONN second annual meeting had the opportunity to attend breakout sessions focused on navigation strategies in the following subject areas: breast cancer, lung cancer, gastrointestinal (GI) cancer, prostate cancer, multi-tumor types, as well as the management of a navigation program. It is our pleasure to offer the following summaries and takehome points from each session.

BREAST CANCER NAVIGATION: 5 STEPS TO BETTER NAVIGATION Sue Bowman, RN, OCN, CBCN, MSW Leesa Mattingly, RN, OCN The breast cancer session focused on the use of the Nursing Process to guide navigation for people with breast cancer. A review of the Nursing Process theory was aligned to navigation using Assessment, Nursing Diagnosis, Creating a Plan of Sue Bowman Care, Implementing the Plan, and Evaluating the Plan. Practical application of the Nursing Process was described in relation to the steps of comprehensive navigation such as preparing for an initial assessment, building a rapport with the patient, and engaging the patient in their Leesa Mattingly care. Promotion of a team approach and use of available resources for holistic care include the patient, physicians, and supportive services and was delineated. Developing logical ways to identify individual barriers and barrier resolution was discussed. The 2012 ACoS CoC Standards were reviewed in relation to the navigation, psychosocial assessment, and survivorship standard requirements. The Nursing Process was applied to developing individualized survivor programs in a way that participants could identify a need in their community and use that as a focus for their program. Interactive activities like Barrier Balls and Case Study kept the audience entertained and thinking in terms of practical tools and patient intervention.

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Take-Home Messages • Patient navigation is exemplified by the Nursing Process theory • All aspects of the navigation process can be addressed by applying the Nursing Process theory • Navigation teams can be assembled with readily available resources, whether a concrete or virtual design • ACoS CoC accreditation standards can be incorporated into any navigation program • To be successful, survivorship programs are designed around patient need LUNG CANCER NAVIGATION Pamela Matten, RN, BNS, OCN Karen Overmeyer As one of the most lethal cancers in the world, lung cancer presents numerous challenges in diagnosis and management. New evidence from the National Lung Screening Trial indicates that screening with low-dose CT may provide Pamela Matten opportunity to detect lung cancer at earlier stages. This breakout session highlighted the role of the thoracic oncology nurse navigator in prevention and screening, and the importance of early detection of cancer with regard to diagnosis and treatment options. One of the Karen Overmeyer multifaceted roles of the nurse navigator includes coordinating a multidisciplinary conference and clinic, putting all diseasespecific specialists together at one time and place to decide on a comprehensive treatment plan. Nursing navigation serves to expedite the pathway from suspicion to diagnosis and diagnosis to treatment on through to survivorship and/or palliative care, while collaborating with involved clinicians, keeping the patient and family at the helm of decision making. Case study presentations typified how the thoracic oncology nurse navigator weaves his/her role throughout the

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BREAKOUT SESSIONS

AONN Breakout Sessions continuum of care, collaborating among clinicians and points of patient contact, providing support and education, and monitoring patients for side effects and effectiveness of therapies. In closing, the breakout session included a glimpse at the development of new frontiers in the treatment of lung cancer with respect to novel targeted agents and the use of molecular biomarkers.

Take-Home Messages The role of the thoracic nurse navigator: • Impacts prevention through education about tobacco cessation and intervention for early detection of lung nodules through low-dose CT screening programs • Expedites the pathway from suspicious finding to diagnosis and treatment • Coordinates care to reduce duplication of services while collaborating with disease-specific clinicians • Serves as a vital one-point-of-contact link to support services, education, and resources • Provides leadership and mentoring by translating into practice the expanding arena of novel treatments for lung cancer GI CANCER NAVIGATION Coralyn Martinez, MSN, RN, OCN Nicole Messier, RN, BSN

Coralyn Martinez

Nicole Messier

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The goal of the GI cancer navigation breakout session was to provide an interactive forum for navigators to discuss current successes and obstacles in developing and maintaining a successful GI navigation program. An overview of 2 GI multidisciplinary programs was provided followed by small group breakout discussion. The small group discussion focused on types of navigation, developing focused navigation and programmatic goals, documentation, referral patterns, resources, and measuring success.

Take-Home Messages • Develop a consistent process – Consistency is the key to success; development of a standard job description with clarification of the role and a reproducible navigation model is the starting point • Provide clear communication to patients and providers – Verbally and in writing, everyone needs to be in the know regarding the plan and any changes that may come about • Be alert to red flags – Identifying and removing barriers to care will facilitate timely service • Use quality standards and guidelines – Using best practice standards, such as NCCN guidelines, ensures appropriate and quality staging and treatment • Measure your success – The use of databases and QA projects can help prove and justify the importance, need, and value of your role as a nurse navigator as well as your program PROSTATE CANCER NAVIGATION Frank delaRama, RN, MSN, AOCNS The prostate cancer navigator breakout session focused on 2 main areas: (1) program development/maintenance, and (2) shared decision making and role of the navigator. Through sharing the story of the development of the prostate Frank delaRama cancer care program at Palo Alto Medical Foundation, many strategies and ideas were identified that can help grow and maintain a program of excellence, with the navigator leading the way.

Take-Home Messages The tasks of the prostate cancer nurse navigator can be divided into 5 fundamental themes: • Helping physicians and other healthcare providers • Helping patients directly with support and advice • Helping the population (eg, community awareness of prostate cancer)

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BREAKOUT SESSIONS

AONN Breakout Sessions • Outcome measurement • Creating avenues for patients to give back (eg, buddy programs, philanthropy)

MULTI-TUMOR TYPE NAVIGATION Shanna Gillming, RN Jay R. Swanson, RN, BSN, OCN

Shanna Gillming

The goal of our breakout session was to have an open discussion regarding concerns with multi-tumor site navigation, identify potential best practices, and review some case studies highlighting the strengths and difficulties of multi-tumor site navigation. We wanted to have an open discussion with each navigator involved.

Take-Home Messages • Multi-tumor site navigation does have its own benefits, and multi-tumor site navigation is the ideal situation for Jay R. Swanson certain institutions • Multi-tumor site navigation also has some downsides • It is helpful to network with other multitumor site navigators to share resources • We would like to explore the idea of a community within AONN for multi-tumor site navigators to network MANAGING A NAVIGATION PROGRAM: THE ROLE OF ADMINISTRATORS Phyllis DeAntonio, RN, MSN, FAAMA Marie DeStefano, RN, MSN, FAAMA Patient navigation is all the buzz in healthcare today. Every patient with an abnormal finding, whether malignant or not, wants a nurse navigator to guide them through this complex business

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we call healthcare. Navigation is as different and unique as the institution where the care is delivered, including the title of the navigator. In some institutions they are known as “nurse navigators,” and in others, “patient navigators.” They Phyllis DeAntonio have been called “patient care coordinators,” “case managers,” and “patient care navigators.” Regardless of their title, the role remains the same. The purpose of the navigator is to assist the patients in receiving prompt quality care during this challenging time in their life in Marie DeStefano order to achieve the best outcome. While the overall goals are better patient outcomes, in an environment where justification of new positions is a constant challenge, it is important to gain support from administration for the ongoing success and funding of this position.

Take-Home Messages Some key points from an administrative view to remember about nursing navigation are: • Evaluate the gaps in your system for better utilization of the navigator • Establish relationships with referring physicians • Establish a point of contact for the patient, whether imaging, physician referrals, selfreferrals, or pathology • Remember, a navigator does not work in isolation but is part of the team approach • Establish volume baselines for ongoing monitoring of out-migration and the ability to maintain patients • Report statistics to administration on a timely basis for ongoing justification of position • Report patient satisfaction; satisfied patients are the best marketers for the institution • Set realistic goals for patient volumes g

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THANK YOU Thank You to All Our Conference Supporters! AONN would like to express its sincere gratitude to all of the companies and organizations that supported our Second Annual Navigation and Survivorship Conference. We thank them for their continued commitment to the community of professionals providing patient navigation and survivorship care services for patients with cancer.

PLATINUM SPONSORS

www.millennium.com

www.pfizeroncology.com

AMGEN

NURSE ONCOLOGY EDUCATION PROGRAM

www.amgen.com

www.noep.org

AMOENA USA CORPORATION

NURSENAV ONCOLOGY

www.amoena.us

www.nursenav.com

CELGENE CORPORATION

ONCOMED

www.celgene.com

www.oncomed.net

CENTER OF EXCELLENCE MEDIA, LLC

PATIENT ADVOCATE FOUNDATION

www.coexm.com

www.patientadvocate.org

HEALTH MONITOR NETWORK

PRIORITY CONSULT

www.healthmonitor.com

www.priorityconsult.com

JANSSEN BIOTECH, INC.

REPROTECH LTD

www.janssenbiotech.com

www.reprotech.com

LIVESTRONG

THE ONCOLOGY NURSE速-APN/PA

www.livestrong.org

www.theoncologynurse.com

LYMPHEDIVAS, LLC

VIDACARE CORPORATION

www.lymphedivas.com

www.vidacare.com

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GUIDELINES

LUNG SCREENING GUIDELINES PUBLISHED BY NCCN By Pam Matten, RN, BSN, OCN Thoracic Oncology Program, St. Joseph Hospital, Orange, California

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n October 26, 2011, lung cancer screening guidelines were published by the National Comprehensive Cancer Network (NCCN). The guidelines became necessary after data from the National Lung Screening Trial (NLST), sponsored by the National Cancer Institute, showed that screening with low-dose computed tomography (CT) decreases disease-specific mortality by 20% and all-cause mortality by 7% when compared to chest x-ray alone.1 Currently, the 5-year survival rate for lung cancer is only 15.6%.2 This is because lung cancer is usually discovered at a late stage when symptoms appear. In most cases, this is too late for curative treatment. CT screening could prove pivotal in changing the course of lung cancer for many individuals. In 2011 alone, it is estimated that 156,900 deaths from lung cancer will occur in the United States.2 The NLST findings and the publication of NCCN lung cancer screening guidelines could be a turning point in early diagnosis of lung cancer. This research and publication are extremely significant and pave the way for future adoption of public and private insurers providing coverage for lung cancer screening for individuals considered “high risk” for lung cancer. Please see the NCCN guidelines for a definition of “high risk.”3 The US Preventive Services Task Force (USPSTF), a federally funded and appointed panel, evaluates screening data and makes recommendations for screening. The USPSTF is slated to review the lung cancer screening data next year. Its recommendations are not mandatory in order to set clinical standards for management, but they are often used by public and private insurers to determine coverage. Throughout November, Lung Cancer Aware ness Month, it is fitting to celebrate the recent findings of the NLST and the adoption of clin-

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ical practice guidelines for lung cancer screening. For too long, smokers have been stigmatized when given a lung cancer diagnosis. Not only is it discriminatory to the patients who are addicted to nicotine, but it is also an inaccurate portrayal of the disease. In fact, data from the Centers for Disease Control and Prevention in 2006 showed that 60% of lung cancer patients had already quit smoking and 17.8% had never smoked.4 Lung cancer patients deserve our attention, support, compassion, and action. As nurse navigators it is our duty to be advocates for our patients. We can do this by promoting and implementing lung screening programs at our institutions. We have evidence now to show that it saves lives. We have NCCN guidelines to follow for diagnosis and surveillance. Determination of coverage is forthcoming. Mammogram reduces mortality from breast cancer by 15%, and given the NLST findings that CT lung screening reduces mortality by 20%, it is likely to become a covered service. Imagine if a decade from now, the adoption of CT lung screening in the United States could raise the 5-year survival rate for lung cancer from 15% to 50%. I challenge nurse navigators to be the catalyst for change in their institutions. Pick up the torch and carry it for all the lung cancer survivors – past, present, and future – that you touch through navigation. You have an opportunity to screen patients for this deadly disease and detect lung cancer in its earliest stages, when it is treatable and curable. Make a difference in your patients’ lives and at the same time be a part of history in the making! g

REFERENCES 1. www.cancer.gov/clinicaltrials/noteworthy-trials/nlst. 2. http://seer.cancer.gov/statfacts/html/lungb.html. 3. www.nccn.org/professionals/physician_gls/pdf/lung_screen ing.pdf. 4. www.cdc.gov/mmwr/preview/mmwrhtml/mm5644a2. htm.

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VIEWPOINT

IT’S (SUPPOSED TO BE) A WONDERFUL LIFE A Case Study Demonstrating the Positive Impact of Survivorship Care By Lillie D. Shockney, RN, BS, MAS

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pinions are varied regarding how “survivorship” should be defined by patients and oncology specialists. There are also mixed opinions about when a patient actually becomes a “survivor.” Is it from the moment of diagnosis? Or should a person be considered a survivor at the time of completion of acute treatment (surgery, chemo, radiation)? Some consider a survivor to be one who has achieved the 5-year mark posttreatment. However, how we as clinicians view this milestone of sorts impacts how we apply survivorship. Just as the character George Bailey in the movie It’s a Wonderful Life has the unique opportunity to see how the world would be different if he had never entered it, my goal is to show how the life of a patient can be dramatically different with the application of effective survivorship care. These fictional case studies are created as a teaching tool to depict the outcomes when we choose to apply survivorship care at the end of acute treatment or even later versus applying it from the point of diagnosis.

CASE STUDY: ABSENCE OF SURVIVORSHIP CARE A 35-year-old woman was diagnosed with stage IIb breast cancer. She wanted surgery done soon and to undergo surgery once rather than having staged reconstruction. She declined neoadjuvant chemotherapy first. Tumor was ER positive and HER2 negative. She underwent a left mastectomy with reconstruction (bilateral deep inferior epigastric perforator [DIEP] flap) and prophylactic mastectomy on the right side, left axillary node dissection, chemotherapy (doce taxel/cyclophosphamide), and radiation, with hormonal therapy for 5 years. Outcomes: • She developed range-of-motion complications that warranted extensive rehab medi-

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cine therapy. Several years later she continues to have problems with her arm and shoulder • Her left flap shrunk as a side effect of radiation, resulting in asymmetry and chronic discomfort • Due to chemotherapy and hormonal therapy she was unable to conceive after her treatment was completed. This was a major blow to both her and her husband • The patient had known atherosclerosis and was advised to have coronary artery bypass graft surgery (CABG), but vessels used for the DIEP flap reconstruction impeded this cardiac surgery procedure

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• She later develops lymphedema of her left arm and requires daily treatments for this and her fatigue • Her heart disease and inability to properly repair it surgically resulted in her developing early-stage congestive heart failure. This resulted in her having shortness of breath when climbing steps and chronic fatigue. These medical problems combined with her shoulder pain and lymphedema resulted in her losing her job • She suffers now from depression • Marriage is strained. Finances are tight due to copayments for her continued chronic treatments of long-term side effects and her inability to work • She was diagnosed 4 years later with ovarian cancer and is still undergoing treatment • She tells others “getting breast cancer is the worst thing that has ever happened to me in my life”

“The team taking care of me here showed me that they just weren’t going to treat the disease; they were going to get to know me as a person and not as someone with stage IIb breast cancer.” CASE STUDY: SAME PATIENT, SURVIVORSHIP CARE BEGINNING AT TIME OF DIAGNOSIS Additional information obtained about this patient included: • She has been married for 2 years, and she and her husband have been trying to conceive a baby. Neither have any children, and both badly want a child of their own. No previous pregnancies, and this is a first marriage for both of them • She works as a waitress at a seafood restaurant 5 days a week • History of rotator cuff injury and repair to her left shoulder 2 years ago • Her mother had breast cancer at age 45 and died of it at age 48. She thinks her maternal grandmother might also have had breast cancer, but it wasn’t talked about back then. Her grandmother died at age 59

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• Family history of cardiac disease. Father had a heart attack at age 52 and died of a stroke at age 56. She has an elevated cholesterol and has been taking a statin for 1 year BEFORE TREATMENT BEGAN, THE FOLLOWING STEPS WERE TAKEN: • Referred for genetics consultation and subsequent testing. Results were positive for BRCA1. The patient decides to do bilateral mastectomies as a result. She doesn’t want to do bilateral oophorectomies yet but was referred for a discussion about this with gynoncology • Referred for a rehab medicine consultation to get instructions regarding range-ofmotion exercises, lymphedema prevention, and ways to prevent reinjuring her shoulder while recovering from her upcoming surgery. The decision was to put in tissue expanders as space holders for now rather than doing immediate DIEP flap reconstruction since she will need radiation as part of her treatment. She will be followed by rehab medicine post-op as well • Referred for a consultation with medical oncology, and though advised to do chemo first to shrink the tumor along with her lymph nodes, she opted to undergo surgery first. The impact of chemo on her reproductive system was discussed at length. Tamoxifen was also discussed, with a plan for her to take hormonal therapy for 2 years, discontinue for childbearing, and then resume postpartum • Referred to fertility preservation consultation to discuss how to preserve her desire to still have a biological child. Eggs were harvested since chemo and hormonal therapy would likely cause chemical menopause • Referred for consultation with plastic surgery regarding the value of staged reconstruction. Patient preferred undergoing surgery once, but when she learned that flaps shrink in response to radiation therapy, she was content to have tissue expanders inserted as space holders for final flap reconstruction later. In recognition of the cardiac history in her family and her own elevated cholesterol levels that warrant treatment, the vessels used for reanastomosing her perforators within the chest area were carefully

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VIEWPOINT

selected, avoiding those that may be needed for cardiac surgery in the future Outcomes: • Patient maintained her range of motion and arm strength post-op • She did not develop lymphedema by being meticulous regarding adhering to the precautions given her by the rehab medicine staff • Fertility preservation was successfully performed. After completing 2 years of tamoxifen therapy, she became pregnant through in vitro fertilization and gave birth to a healthy baby boy • She underwent bilateral salpingo-oophorectomies 6 months postpartum to prevent ovarian cancer. She was placed on an aromatase inhibitor after this rather than resuming tamoxifen • She did develop heart disease and underwent a successful CABG procedure 6 years posttreatment • She has experienced few problems with fatigue and has remained active • Her reconstruction was done as a staged procedure; after her chemo and radiation, she underwent bilateral DIEP flap reconstruction, at which time the temporary tissue expanders were switched out. The reconstruction looked great, without the radiation affecting its cosmetic appearance. She had no chronic pain issues from these procedures

• She continues to work as a waitress at a busy seafood restaurant and now works part-time after the birth of her son so that she can spend more time taking care of him • She also devotes 2 hours a week to being a survivor volunteer for the breast center where she received her treatment. She provides support to newly diagnosed breast cancer patients • When asked about her experience, she tells new patients, “I was scared at first when I heard the diagnosis. How was this going to impact my life? Can I still have a child? What am I going to look like? But the team taking care of me here showed me that they just weren’t going to treat the disease; they were going to get to know me as a person and not as someone with stage IIb breast cancer. And in doing so, they helped me stay on track with my life goals. This is truly a wonderful life!” The measurable difference in the quality of life for this woman when survivorship care is initiated from the onset of the diagnosis is inspiring. By being proactive in the case of this patient, her life goals could be maintained, her physical and emotional quality of life could be preserved, and perhaps even enriched. My recommendation: Start survivorship care simultaneous to confirming the cancer diagnoses of your patients so that they too can say, “it’s a wonderful life.” g

Go Online to Access All Conference Presentations at www.AONNonline.org/2011-slides

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