november 2011, vol 2, no 6

© 2011 Green Hill Healthcare Communications, LLC

NAVIGATING PATIENTS ACROSS THE CONTINUUM OF CANCER CARETM

• Best Practices in Navigation andSurvivorship

• Gauging Navigation Program Performance

• Setting Up and Maintaining SurvivorshipPrograms

• Screening for Psychosocial Distress

• Providing Compassionate Care

• Site-Specific and Multi-Tumor TypeNavigation

• Navigation Program Administration

• Keynote Spotlights

Highlights Include:

Highlights from theSecond Annual Navigation

and Survivorship Conference

Lung Screening Guidelines Published by NCCNBy Pam Matten, RN, BSN, OCN

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

Also in this issue:

NOVEMBER 2011 www.AONNonline.org VOL 2, NO 6

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

©2011 Genentech USA, Inc. So. San Francisco, CA All rights reserved. HER0000422100 6/11

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. In a pivotal adjuvant trial, one patient who developed CHF died of cardiomyopathy

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

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

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

Exacerbation of chemotherapy-induced neutropenia has also occurred

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

The 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

Boxed WARNINGS and Additional Important Safety Information Adjuvant indications

Your inspiration,

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

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

As part of a treatment regimen containing doxorubicin, cyclophosphamide, and either paclitaxel or docetaxel

With docetaxel and carboplatin

As a single agent following multi-modality anthracycline-based therapy

* High-risk is defi ned as ER/PR positive with one of the following features: tumor size >2 cm, age <35 years, or tumor grade 2 or 3.

HER commitment


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]

Incidence of CHF Study Regimen Herceptin Control 1 & 2a ACb→Paclitaxel+ Herceptin 2% (32/1677) 0.4% (7/1600) 3 Chemo→Herceptin 2% (30/1678) 0.3% (5/1708) 4 ACb→Docetaxel+ Herceptin 2% (20/1068) 0.3% (3/1050) 4 Docetaxel+Carbo+ Herceptin 0.4% (4/1056) 0.3% (3/1050)

Incidence NYHA I−IV NYHA III−IV Study Event Herceptin Control Herceptin Control 5 Cardiac (AC)b Dysfunction 28% 7% 19% 3% 5 Cardiac (paclitaxel) Dysfunction 11% 1% 4% 1% 6 Cardiac Dysfunctionc 7% N/A 5% N/A

1 Year Herceptin Observation

1 Year Herceptin Observation

Herceptin Paclitaxel Alone + ACb A

pain 22% 34% 22% 23% 18% syndrome 10% 12% 5% 12% 6% injury 6% 13% 3% 9% 4% reaction 3% 8% 2% 4% 2%C 7% 11% 1% 28% 7%

vomiting 8% 14% 11% 18% 9%

edema 10% 22% 20% 20% 17%

neuritis 2% 23% 16% 2% 2%

increased 26% 41% 22% 43% 29%

simplex 2% 12% 3% 7% 9%

infection 5% 18% 14% 13% 7%


Herceptin 2% (32/1677) 0.4% (7/1600) Herceptin 2% (20/1068) 0.3% (3/1050) Herceptin 0.4% (4/1056) 0.3% (3/1050)

N/A 5% N/A

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

CardiacHypertension 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 DisordersCough 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 DisordersDiarrhea 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 DisordersArthralgia 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%)

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

Nervous System DisordersHeadache 162 (10%) 49 (3%)Paraesthesia 29 (2%) 11 (0.6%)Skin & Subcutaneous Tissue DisordersRash 70 (4%) 10 (0.6%)Nail Disorders 43 (2%) 0 (0%)Pruritis 40 (2%) 10 (0.6%)General DisordersPyrexia 100 (6%) 6 (0.4%)Edema Peripheral 79 (5%) 37 (2%)Chills 85 (5%) 0 (0%)Aesthenia 75 (4.5%) 30 (2%)Influenza-like Illness 40 (2%) 3 (0.2%)Sudden Death 1 (0.06%) 0 (0%)InfectionsNasopharyngitis 135 (8%) 43 (3%)UTI 39 (3%) 13 (0.8%)Immune System DisordersHypersensitivity 10 (0.6%) 1 (0.06%)Autoimmune Thyroiditis 4 (0.3%) 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 failureDigestive 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%


Herceptin +FC FC (N = 294) (N = 290) N (%) N (%)

Body System/ All Grades All Grades Adverse Event Grades 3 / 4 Grades 3/ 4

Investigations Neutropenia 230 (78) 101 (34) 212 (73) 83 (29) Hypokalemia 83 (28) 28 (10) 69 (24) 16 (6) Anemia 81 (28) 36 (12) 61 (21) 30 (10) Thrombocytopenia 47 (16) 14 (5) 33 (11) 8 (3)Blood And Lymphatic System Disorders Febrile Neutropenia _ 15 (5) _ 8 (3)Gastrointestinal Disorders Diarrhea 109 (37) 27 (9) 80 (28) 11 (4) Stomatitis 72 (24) 2 (1) 43 (15) 6 (2) Dysphagia 19 (6) 7 (2) 10 ( 3) 1 (≤1)Body as a Whole Fatigue 102 (35) 12 (4) 82 (28) 7 (2) Fever 54 (18) 3 (1) 36 (12) 0 (0) Mucosal Inflammation 37 (13) 6 (2) 18 (6) 2 (1) Chills 23 (8) 1 (≤1) 0 (0) 0 (0)Metabolism And Nutrition Disorders Weight Decrease 69 (23) 6 (2) 40 (14) 7 (2)Infections And Infestations Upper Respiratory Tract Infections 56 (19) 0 (0) 29 (10) 0 (0) Nasopharyngitis 37 (13) 0 (0) 17 (6) 0 (0)Renal And Urinary Disorders Renal Failure and Impairment 53 (18) 8 (3) 42 (15) 5 (2)Nervous System Disorders Dysgeusia 28 (10) 0 (0) 14 (5) 0 (0)

LVEF <50% and Absolute Decrease Absolute from Baseline LVEF Decrease

LVEF ≥10% ≥16% <20% and <50% decrease decrease ≥10% ≥20%

Studies 1 & 2b AC→TH 22.8% 18.3% 11.7% 33.4% 9.2% (n=1606) (366) (294) (188) (536) (148)

AC→T 9.1% 5.4% 2.2% 18.3% 2.4% (n=1488) (136) (81) (33) (272) (36)

Study 3 Herceptin 8.6% 7.0% 3.8% 22.4% 3.5% (n=1678) (144) (118) (64) (376) (59)

Observation 2.7% 2.0% 1.2% 11.9% 1.2% (n=1708) (46) (35) (20) (204) (21)

Study 4c TCH 8.5% 5.9% 3.3% 34.5% 6.3% (n=1056) (90) (62) (35) (364) (67)

AC→TH 17% 13.3% 9.8% 44.3% 13.2% (n=1068) (182) (142) (105) (473) (141)

AC→T 9.5% 6.6% 3.3% 34% 5.5% (n=1050) (100) (69) (35) (357) (58)


Herceptin +FC FC N (%)

B

S

2 (1) 43 (15) 6 (2) 7 (2) 10 ( 3) 1 (≤

Inflammation 37 (13) 6 (2) 18 (6) 2 (1)

Tract Infections 56 (19) 0 (0) 29 (10) 0 (0)

Impairment 53 (18) 8 (3) 42 (15) 5 (2)N

LVEF Decrease

LVEF ≥ <50% decrease decrease ≥

HERCEPTIN® [trastuzumab]Manufactured by:Genentech, Inc.A Member of the Roche Group1 DNA WaySouth San Francisco, CA 94080-4990

Initial US Approval: September 1998Revision Date: October 29, 2010Herceptin® is a registered trademark of Genentech, Inc.HER0000097200©2010 Genentech, Inc.


8 NOVEMBER 2011 • VOLUME 2, ISSUE 6 AONNONLINE.ORG

PUBLISHING STAFFSENIOR VICE PRESIDENT, SALES & MARKETING

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CONTRIBUTING AUTHORStefanie Beeman

PRODUCTION MANAGERStephanie Laudien

QUALITY CONTROL DIRECTORBarbara Marino

BUSINESS MANAGERBlanche Marchitto

CIRCULATION [email protected]

NOVEMBER 2011 • VOL 2, NO 6TABLE OF CONTENTS

Journal of Oncology Navigation & Survivorship, ISSN appliedfor; (online) is published 6 times a year by Green HillHealthcare Communications, LLC, 241 Forsgate Drive,Suite 205C, Monroe Twp, NJ 08831. Telephone:732.656.7935. Fax: 732.656.7938. Copy right ©2011 byGreen Hill Health care Com muni cations, LLC. All rightsreserved. Journal of Oncology Navigation & Survivorship logois a registered trademark of Green Hill HealthcareCommunications, LLC. No part of this publication maybe reproduced or transmitted in any form or by any meansnow or hereafter known, electronic or mechanical, includ-ing photocopy, recording, or any informational storageand retrieval system, without written permission from thepublisher. Printed in the United States of America.

EDITORIAL CORRESPONDENCE should be ad dressed to EDITORIAL DIRECTOR, Journal ofOncology Navigation & Survivorship (JONS), 241 ForsgateDrive, Suite 205C, Monroe Twp, NJ 08831. E-mail:[email protected]. YEARLY SUBSCRIPTIONRATES: United States and possessions: individuals,$50.00; institutions, $90.00; single issues, $5.00. Orderswill be billed at individual rate until proof of status is con-firmed. Prices are subject to change without notice.Correspondence regarding permission to reprint all orpart of any article published in this journal should beaddressed to REPRINT PERMISSIONS DEPART -MENT, Green Hill Healthcare Communications, LLC,241 Forsgate Drive, Suite 205C, Monroe Twp, NJ 08831.The ideas and opinions expressed in JONS do not neces-sarily reflect those of the editorial board, the editorialdirector, or the publisher. Publication of an advertisementor other product mention in JONS should not be con-strued as an endorsement of the product or the manufac-turer’s claims. Readers are encouraged to contact the man-ufacturer with questions about the features or limitationsof the products mentioned. Neither the editorial boardnor the publisher assumes any responsibility for any injuryand/or damage to persons or property arising out of orrelated to any use of the material contained in this period-ical. The reader is advised to check the appropriate med-ical literature and the product information currently pro-vided by the manufacturer of each drug to be administeredto verify the dosage, the method and duration of adminis-tration, or contraindications. It is the responsibility of thetreating physician or other healthcare professional, relyingon independent experience and knowledge of the patient,to determine drug dosages and the best treatment for thepatient. Every effort has been made to check generic andtrade names, and to verify dosages. The ultimate respon-sibility, however, lies with the prescribing physician.Please convey any errors to the editorial director.

AONN CONFERENCE HIGHLIGHTS

12 Navigation and Survivorship General Sessions

26 A View from San Antonio

28 Keynote Speakers

30 Conference Abstracts

34 Breakout Sessions: Summaries and Take-Home Messages

GUIDELINES

38 Lung Screening Guidelines Published by NCCNBy Pam Matten, RN, BSN, OCN

VIEWPOINT

39 It’s (Supposed to Be) a Wonderful Life: A Case StudyDemonstrating the Positive Impact of Survivorship CareBy 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 abstractsubmission. Ms Blaseg is from Billings Clinic Cancer Center, Billings, Montana. Our sincereapologies to Ms Blaseg for the mistake.

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

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Editor-in-ChiefLillie D. Shockney, RN, BS, MASUniversity Distinguished Service AssociateProfessor of Breast CancerDepts of Surgery and OncologyAdministrative Director, Johns HopkinsBreast Clinical ProgramsAdministrative Director, Johns HopkinsCancer Survivorship ProgramsAssociate Professor, JHU School ofMedicine, Depts of Surgery &Gynecology and ObstetricsAssociate Professor, JHU School of [email protected]

Section EditorsBreast CancerSharon Gentry, RN, MSN, AOCN, CBCNBreast Health NavigatorDerrick L. Davis Forsyth Regional Cancer Center

Prostate CancerFrank delaRama, RN, MS, AOCNSClinical Nurse SpecialistOncology/GenomicsCancer Care ClinicPalo Alto Medical Foundation

Healthcare Disparities Linda Fleisher, PhD, MPHAssistant Vice PresidentOffice of Health Communications & Health DisparitiesAssistant ProfessorCancer Prevention & ControlFox Chase Cancer Center

Health Promotion and OutreachIyaad Majed Hasan, MSN, FNPDirector and Nurse PractitionerSurvivorship Clinic and ProgramCleveland ClinicTaussig Cancer Center

AONN Research CommitteeElaine Sein, RN, BSN, OCN, CBCNSenior Project ManagerFox Chase Cancer Center Partners

Marcy Poletti, RN, MSN Program Administrator, Oncology ServicesWake Forest University Baptist Medical Center

Penny Widmaier, RN, MSNNurse NavigatorBotsford Cancer Center

Executive Director, AONNSean T. [email protected]

MISSION STATEMENTThe Journal of Oncology Navi gation &Survivorship (JONS) promotes reliance on evi-dence-based practices in navigating patientswith cancer and their caregivers through diagno-sis, treatment, and survivorship. JONS alsoseeks to strengthen the role of nurse and patientnavigators in cancer care by serving as a plat-form for these professionals to disseminate origi-

nal research findings, exchange bestpractices, and find support for theirgrowing community.

Dear Colleague,

E ach year, we take time to acknowl-edge the things for which we aremost grateful. Of course, family and

health immediately come to mind, butthere are also several things in my profes-sional life for which I am grateful. InSeptember we hosted the Second AnnualNavigation and Survivorship Con fer -ence, the official national meeting of the Academy of Oncology Nurse Navigators(AONN). At this meeting, more than 400 nurse and patient navigators gathered todiscuss the changing landscape of patient navigation and survivorship care for patientswith cancer and to define ways to further develop the profession. Over the 3 days ofthe conference, attendees were able to make new connections with members in theirfield, share best practices, and learn from each others’ experiences. It is this sort ofexchange 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.

With best regards,

Lillie D. ShockneyRN, BS, MASEditor-in-Chief

A SEASON OFGRATITUDE

“And for this opportunityto connect with othersin this field, I am trulygrateful.”

LETTERS FROM LILLIE



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AONN CONFERENCEPROCEEDINGS


“P atients come first” is the mission of thenavigation program set forth by TriciaStrusowski, MS, RN, director of cancer

care management at Helen F. Graham CancerCenter, Christiana Care Health System inNewark, Delaware.

A successful navigation program utilizes manytools to assess patient needs, resources, and treat-ment plans and to create navigator job responsi-bilities.

“We use a preassessment tool to list goals of thenavigation program, including goals for adminis-tration, patients, families, navigators, and physi-cians,” Strusowski said. “We also need to knowthe barriers and the challenges to the programsuch as tumor types to be covered and the time-line for implementation.”

Preassessment also entails choosing a navigatorand resources, including dietitians, social workers,financial counselors, and hospice services.

Also of importance is a relationship with com-munity patient support agencies.

“We partnered like crazy with the community,”Strusowski said. “We did not reinvent the wheelthough. We had the wellness community, educa-tional programs, and the American CancerSociety.”

COMMUNITY OUTREACH PROGRAMSGeorge Washington Cancer Institute inWashington, DC, has developed the DC City-wide Patient Navigation Research Program tohelp patients who have problems with language,finances, and transportation.

“The citywide network crosses seven health-care institutions and is made up of lay navigators,nurses, and social workers,” said Sharon Gentry,RN, MSN, AOCN, CBCN, a breast health navi-gator at Derrick L. Davis Forsyth Regional CancerCenter in Winston-Salem, North Carolina.“They’ve come to form a web across the city tohelp people get care, so it’s been incredible towatch this develop.”

Another program at the University of Medicineand Dentistry of New Jersey was led by a primarycare physician who kept hearing horror stories ofLatinos trying to navigate through the healthcaresystem for colon cancer screening, she said.

The navigators, who understood the culture andaddressed the inherent community barriers, devel-oped a resource guide with the patients’ input thatcould be used by navigators and care providers inthe community. The focus became early cancerdetection for this population, and the program,with the help of area churches and communityorganizations, bridged the gap between the com-munity and the healthcare system.

RESPONSIBILITIES AND TREATMENTPLANSEveryone’s job, first and foremost, is patient care,Strusowski said.

“You want to make sure that your job descrip-tion really reflects what your navigator does. Allthe staff members in my department have veryspecific job descriptions. You have to be efficientand get the patients to the services they need assoon as possible,” she said.

“When patients arrive at the multidisciplinarycenter, we need to know the preliminary treat-ment plan. We also want to list their lead physi-cian, so that physician takes ownership and doesa comprehensive assessment.”

From the beginning of the program, Strusowskisaid she knew they would have to track and keepreports. Documenting patient and physician satis-faction is important, and the program’s basic track-ing tool, with a patient identifier and date and timeof appointment, has raised the level of care.

“My nurses are all cross-trained,” she said.“Nothing will fall through the cracks because wehave order sets. I use my clerks to their fullestpotential. Nurses need to do what nurses went toschool for.”

And using the Midas computer system hashelped with reporting to administration. “I canpull the very specific coordination of appoint-ments that we’ve done. I send these tools toadministration so they can see what we’re up to,”Strusowski said.

The final tool in Strusowski’s arsenal is apatient navigation satisfaction survey that is dis-tributed in the private doctors’ offices.

“We keep it really simple, and it’s going to be a1 to 5 scale. ‘Was your nurse navigator friendly?Did she answer your questions in a manner you

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

Sharon Gentry, RN, MSN, AOCN, CBCN

Tricia Strusowski, MS, RN

JONS_November 2011_v6_JONS_November 2011 11/16/11 2:12 PM

AONNONLINE.ORG JOURNAL OF ONCOLOGY NAVIGATION & SURVIVORSHIP 13


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

SURVIVORSHIP CARE PLANNINGAccording to the National Cancer Institute, aperson is a survivor from the time of diagnosisuntil the end of life. “But I think it’s critical that we need to hear

that the survivor not only includes the patient. Itincludes family, friends, and caregivers. Everyoneis affected,” Gentry said.Questions for survivorship needs assessment

within a navigation program include the following:• How do you define cancer survivorship inyour community?

• How do patients within your practice obtainsurvivorship services?

• What type of survivorship services do yourpatients currently utilize?

• Do you have enough local resources?

Survivorship care planning is also detrimental,Gentry said. Patients need help with some of themedical and physical effects of cancer treatmentthat may persist, including neuropathy, secondprimary tumors, infertility, and heart disease.Are the primary physicians in the communitywilling to take the patient back with some ofthese issues?Psychosocial concerns also may persist. De -

pression, fear of recurrence, and physical problemsare all on patients’ minds.A navigation program can help survivors receive

the care they need by:• Facilitating recommended surveillance fordevelopment of new cancers, and

• Providing personalized support, such as edu-cating survivors about their health needs andconcerns and ensuring adherence to treat-ment and follow-up activities

Gentry said that patients can look to theAmerican Society of Clinical Oncology and theNational Comprehensive Cancer Network foranswers to lingering questions. g

W hen facing one of the most difficultchallenges of their lives, many cancerpatients and their families also have to

deal with overwhelming barriers to care. Havinga navigator to identify and remove those barrierscan provide patients with the care they need andhelp to eliminate some of their burden.These common barriers to care and potential

solutions to eliminate them were addressed bybreast health navigator Sharon Gentry, RN,MSN, AOCN, CBCN.

IDENTIFYING BARRIERSGentry outlined some of the types of barriers thatnurse navigators commonly face:

Cultural BarriersCultural beliefs regarding treatment. Although nursenavigators excel at the clinical component of can-cer care, Gentry said that to correctly interpret thecultural beliefs of specific populations, it is best toinclude a community navigator or lay navigator.

Delay and refusal of care. According to Gentry,

navigators will contend with people who refusetreatment, mostly because of fear. “It’s okay if theydon’t want treatment as long as they’re making aninformed decision; as long as you’ve tried to talkwith them and explain to them the benefits theycan gain from treatment,” she said.

Bias. African-Americans as a whole receivefewer cardiovascular procedures, organ transplants,orthopedic surgeries, cesarean sections, and lungoperations for cancer compared with Caucasians.“Is it access? Are we not getting that informationout to them?” Gentry asked, and stated that “Wehave to think about our own biases that we maybring into the situation. And we hope they’re notthere, but we have to be truly honest.”

Language. In the United States, 1 in 5 peoplespeaks a language other than English, and non-English speakers have greater difficulty under-standing information from their doctor’s office.

Geographic BarriersTransportation. Gentry said that one of the maintopics of discussion by patients is transportation

Breaking Down Barriers to Care Can Ease CancerPatients’ Burden




arrangements to and from appointments. Citing astudy by Electra D. Paskett, PhD,1 Gentry said the2 major barriers most navigators spend their timeon are “insurance and out-of-pocket cost, andtransportation.”

Socioeconomic BarriersEducation.Nearly half of America’s adults are poorreaders, or “functionally illiterate.” Gentry referredto a health literacy assessment test presented by E.Mullen at the Oncology Nursing Society’s 36thAnnual Congress that can help improve commu-nication.2 “This is a three-minute estimate of adultliteracy on medicine. [Mullen] says we often over-estimate the patient’s ability to understand medicalinformation. This three-minute test could evaluatepatients without embarrassing them.”

Uninsured/Underinsured. Citing a report fromthe Institute of Medicine, “Too Little, Too Late,”Gentry stated that uninsured patients receiveone-half the healthcare of insured patients, andthat the uninsured die sooner than insuredpatients because of delayed diagnosis.

POTENTIAL SOLUTIONS AND RESOURCESGentry hopes that the Patient Protection andAffordable Care Act will be part of the answer tobreaking down barriers to care, but she’s not cer-tain that this will be the case. “The goal is to pri-oritize healthcare. It’s going to make it moreaffordable, it’s going to make it more accessible,and it’s going to make it accountable,” whilepromising to tackle disparities, said Gentry.She focused on what the bill would do for nav-

igators and how they will most likely interactwith it. “It says it’s going to contain several provi-sions to improve healthcare access for racial andethnic minorities and underserved populations.So number one, pay attention to what your cen-sus is telling you about what is going on in yourcommunity,” Gentry said.“They’re going to have planning grants to

states to facilitate promotion of medical homes

for Medicaid enrollees with chronic conditions,”she said, adding that they will fund community-based interdisciplinary teams to provide supportto primary care practices and also fund consor-tiums of healthcare providers to coordinate andintegrate healthcare services for low-income,uninsured, and underinsured populations.“These resources will contribute to the existing

care continuum; you are part of that now-existingcare continuum so hopefully this is going to opensome funds for you.” Gentry hopes that the billwill allow for more comprehensive case manage-ment, more care coordination, more health pro-motion, transitional care, patient and family sup-port, and referral to community sources.Until that happens, Gentry is focusing on

ways to help those in need right now. She com-piled a list of resources for navigators that theycan refer to:• Cancer Care. www.cancercare.org. Offersfinancial assistance, grants, counseling, andsupport groups.

• Georgia Cancer Coalition. www.georgiacancer.org. “There are usually programs inyour state that you might know about,”Gentry said, such as providing free cellphone access for patients.

• NeedyMeds. NeedyMeds.org. Provides in -formation on patient assistance programs.

• Partnership for Prescription Assistance.www.pparx.org. Helps qualifying patientswithout prescription drug coverage.

• Patient Advocate Foundation. www.patientadvocate.org. Provides patients with arbitra-tion, mediation, and negotiation to health-related issues.

•Mautner Project. www.mautnerproject.org.Support organization for lesbians with cancerand their loved ones.

• The Tigerlily Foundation. www.tigerlilyfoundation.org. Focuses on young womenwho have breast cancer.

• Joe’s House. www.joeshouse.org. A lodgingresource for cancer patients. g

REFERENCES1. Paskett ED, Harrop JP, Wells KJ. Patient navigation: an

update on the state of the science. CA Cancer J Clin.2011;61:237-249.

2. Mullen E. Assessing health literacy of elderly cancerpatients in clinical practice: what clinicians need to know.Oncology Nursing Society 36th Annual Congress; April2011; Boston, MA. Poster 434.

“...uninsured patients receive one-half thehealthcare of insured patients, and theuninsured die sooner than insured patientsbecause of delayed diagnosis.”




A collaborative approach to patient naviga-tion that involves both clinical and com-munity navigators can ensure that the

final navigation program reflects the needs ofyour particular institution, according to LindaFleisher, PhD, MPH, assistant vice president ofHealth Communications and Health Disparitiesat Fox Chase Cancer Center, Philadelphia.Navigation is both a noun and a verb, she said.

“Ask yourself, ‘Whose role is it?’ But also askyourself, ‘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 CancerCenter, have taken a collaborative approach topatient navigation by bringing together thecommunity side and clinical side in a compre-hensive fashion.“Many of us at Fox Chase want to have a more

comprehensive, systematic approach to patientnavigation,” Fleisher said. “One size does not fitall. There are a lot of best practices and standardsfor navigation programs, but the program at yourinstitution needs to be designed to fit your needs.”

STEERING COMMITTEEIn her quest to get navigation programs off theground, Miller said she has learned many lessonsover the past few years. A key accomplishmentwas 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 Lindaand I bridge that gap,” said Miller, who is also acancer survivor. “She’s doing a lot of work in thecommunity setting, and I’m doing it in the clinicalsetting. 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 dis-

ease specific. They began with a breast cancerprogram and have added head and neck, gynecol-ogy, and thoracic. They are launching a gastroin-testinal program and an expanded gynecologyprogram, and they have placed a navigator in theinfusion room.“Each and every one of the navigators is part of

the steering committee,” she said. “We are notmaking decisions, and we are not building a

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

QUALITATIVE MEASURING“My responsibility as the administrator is to makesure that I’m collecting data, measuring, and sus-taining the program,” Miller said. “My role is tomake sure that I’m pushing out the information tophysician champions, senior leadership, and theboard so that navigation becomes a part of theirverbiage and they understand what we’re doing. Ican’t tell you enough that it’s very, very importantto data capture.”Equally important is finding a database that

makes sense for your institution. Included in thedatabase 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 about40% to 50% now down to about 15% to 20%,”Miller said.It’s also important to have effective internal and

external marketing, including physician champi-ons, presentations to the management team, aWeb site, and commercial and print materials.“By adding patient navigation, our retention

rate on an average, across the disease sites, issomewhere 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 sat-isfaction and impact evaluation

• Expand navigators’ role in service line design• Continue education about the role and scopeof navigation

“I would suggest that you communicate withyour administration and that you build somethingthat is going to help sustain your program,” Millersaid. “I really believe that navigation is ever-chang-ing, ever-evolving, and always patient-focused.”

COMMUNITY OUTREACH PROGRAMSCommunity outreach at Fox Chase starts with aprogram called the Office of Health Com -munications and Health Disparities, whichincludes community cancer education in multiplelanguages and community screening. And itsResource Education Center, for both navigatorsand patients, work hand-in-hand.

Patient Navigation Across the Continuum

Linda Fleisher, PhD, MPH

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




“Community navigators are different from the clinical navigators,” Fleisher said. “These areseasoned health educators who have extensivecommunity work and cancer background. Theirrole is really to ensure follow-up care. They arehelping with appointments, transportation, andreferrals to support services.”

Fox Chase’s Mobile Mammography Navi -gation is a pilot program that focuses on theunderserved population. Women who partici-pate and have an abnormal finding are con-tacted by a navigator, who then assesses andaddresses barriers to follow-up care. The navi-gator then provides support to return to FoxChase or another appropriate facility for fol-low-up.

“We looked at 29 women who were unin-sured. Many of them needed additional tests,”Fleisher said. “One of those women was diag-nosed with breast cancer, and we’ve been able to

get her insurance. She’s being treated at FoxChase. To me, this is the success. I do not wantto be screening in the community and not haveways to get people to receive quality care.”

A separate service called Project REACH is apilot for the community-based prostate risk assess-ment program and is geared toward high-riskmen. Community partners provide a screeninglocation for the mobile van, which provides fullservices, including digital rectal examination,PSA screening, and education.

“So far, we’ve screened 12 men,” Fleisher said.“Like the mammography program, the navigatorsare present at the screenings, they address barri-ers, follow all men with an abnormal result, andwork with financial services.”

She said that plans for community navigationinclude identifying more opportunities for fund-ing and seeking IRB approval to conduct qualityimprovement and outcomes analyses. g

www.AONNonline.org/conference/2012

September 14-16, 2012 • Phoenix, Arizona

Third Annual Navigation and Survivorship ConferenceSAVE THE DATE

� ��




Helping Survivors Navigate Their Way to Better HealthPost Cancer

T he number of US cancer survivors hoversaround 12 million today and is projected togrow to 20-million-plus by 2020, creating a

critical need for focused patient navigation–ori-ented strategies for said survivors. To better understand how to address survivor-

ship, it is imperative to understand terms such as“patient navigation,” defined by the Commissionon Cancer (CoC) as “individualized assistanceoffered to patients, their families and caregivers,to help overcome barriers to care, whetherthrough the healthcare system or the environ-ment, and also to facilitate timely access to carefrom diagnosis through all phases of the cancerexperience,” 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 cancerwho now live more than 5 years and the 75% ofchildren with a cancer diagnosis who live beyond10 years, according to Pratt-Chapman.“There are a growing number of patients in

the system and a fragmented system that they’retrying to navigate,” Pratt-Chapman says.“Despite advances that the numbers of survivorsrepresent, along with better treatments anddiagnoses, many individuals still slip through thecracks. As a result, there is higher cancer inci-dence, mortality, and lower survival rates amongcertain populations.” Hence, the birth of naviga-tion. While defining patient navigation is clear-cut, defining survivorship is a bit murkier – andmore individualized, she said.Officially, the National Coalition for Cancer

Survivorship defines survivorship from the pointof diagnosis and through the balance of life. Pollsand surveys from the American Cancer Societyand LIVESTRONG Founda tion have found thatsurvivors have increasing expectations for goodquality of life, longer life, and a need to addresseffects that occur after treatment ends.With such definitions in mind, Pratt-Chapman

shared goals of the National Cancer SurvivorshipResource Center, which is a collaborationbetween the American Cancer Society and GWCancer Institute: identify gaps in information

content and delivery channels for survivors andassess the nationwide surveillance system capaci-ty to longitudinally monitor cancer survivor out-comes. The center provides direct survivorshipnavigation and support as well as training aroundsurvivorship for patient navigators.Pratt-Chapman also addressed an overview of

standards relevant to the survivorship discussion.The CoC patient navigation standard requiresthat each institution accredited by the CoC con-duct an assessment of barriers to care for cancerpatients. It has to include all cancer types in theneeds assessment. The Cancer Committee needsto evaluate and report on the progress of the pro-gram annually, and that report needs to addresshealth disparities identified, navigation process,populations served, barriers identified, and met-rics used to track your program.

EXAMPLE OF A SURVIVORSHIP CLINICPutting those standards into practice in clinicform, Chi H. Kim, MD, an internal medicinephysician and GW associate professor of medi-cine, discussed the cancer survivorship clinic atthe GW Medical Center. She was appointed toinitially help launch and navigate the cancer sur-vivorship clinic, called the “Thriving AfterCancer” program, which involves suborganiza-tions of the GW Medical Center such as theGWU Hospital and the Medical FacultyAssociates, along with the GW Cancer Institute.The clinic can provide screening, diagnosis,

and treatment of cancers, psychosocial aspects ofpatient cancer needs, and can address cancer sur-vivorship. It features a multidisciplinary survivor-ship clinic approach with a nurse practitioner, aninternal medicine physician, along with a pedi-atric oncologist. There’s a patient navigator(social worker), mental health assessment provid-ed by Lorenzo Norris, MD, and residents, a dieti-tian, and a nutritionist. There’s also an exerciseprogram called “TAC Fit,” where patients receivea personalized fitness assessment and goals.“We wanted to really improve the follow-up of

these patients, since a lot of them were lost to fol-low-up care,” she said. “The survivorship careplan was a really key component. At GWU, wehave a two-page survivorship care plan detailing

Chi H. Kim, MD

Mandi Pratt-Chapman, MA

Lorenzo Norris, MD




diagnosis, what age, actual dates, surgeries,chemotherapies, including their dosages, etc, aswell as follow-up care.”

“It empowers the patient so they know whatthey need to pursue, but furthermore, they canprovide this to their future physicians or their pri-mary care doctors who can also help them to nav-igate and screen through these late effects for therest of their lives,” Dr Kim said.

Prior to the patient coming to the clinic, DrKim and colleagues do what is called a huddle.“[Everyone] gets together and we actually sitdown and talk about each patient, and point outtheir unique history, what their medical needsare,” she says. “Then we can talk about our gamefor each patient.”

Before the patient leaves, the navigator pro-vides the patient with the survivorship care plan,as well as a packet about just survivorshipresources, not to mention a future follow-up withthe patient to encourage compliance.

One of the challenges or threats to such sur-vivorship plans is the financial return on invest-ment, which, according to Dr Kim, may be little tonone. “It may not be sufficient to cover our pro-gram costs, but again, we need to look beyond thefinancial and see the clinical need.”

Dr Norris, director of consult liaison psychiatryat GW, worked with Pratt-Chapman and othersat Medical Faculty Associates in setting up apsychosocial service for cancer survivors.

To have a successful program, “Ultimately,you’re trying to change the culture. We’re tryingto implement a new paradigm of cancer as achronic disease that is treatable,” said Dr Norris.

Consider developing a 5-year plan with a con-cise mission statement. “The mission statementwill put the boundaries on what it is that you aretrying 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’scase, the goals were to improve survivorshipposttreatment quality of life, provide psychiatricsupport to all GW survivorship programs, trainand teach residents, and increase collaborationbetween various providers of survivorship care.

“Once you’ve started to get an idea of your ownstrengths, your own capacity, then you have toconsider the needs assessment,” Dr Norris said.You can use standardized questionnaire, pollpatients, or spend a day or two with an oncologistor a support group from a survivorship perspective.

After the needs assessment, determine an effec-tive way to reach highest risk populations. “Wehad to figure out a way to get less fragmentation,more support in treatment for high-risk. We hadto make it easier for clinicians to access us 24/7 ifwe had a patient that was suicidal,” he said.

Next, the market assessment, through targetedtactics, helps carry out your goals. In GW’s case,they use strategies such as acute crisis interven-tion, time-limited focus (8 sessions), focused phar-macotherapy, building and sustaining relation-ships, management of psychiatric needs, riskstratification (survivorship care plan), and referralto a social worker or navigator-led support group.

The support group touches on a need of manysurvivors – distress. “Most distress only needsguidance. Distress gives you a common languagein which to talk to clinicians about the psy-chosocial needs of patients,” he said. “If you setit up correctly, distress leads to referrals.”

Lastly, when setting up such survivor-focusedservices, Dr Norris emphasizes, “Do not startthese services if you are working alone in asy-lum. This level of extensive service, you haveto have some type of coronation of workingwith someone. Also, be very patient, very, verypatient.” g

“While defining patient navi gation is clear-cut, defining survivorship is a bitmurkier – and more individualized,”saidPratt-Chapman.




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

A pilot study conducted at the Robert H.Lurie Comprehensive Cancer Center ofNorthwestern University, Chicago, dem -

onstrated that psychosocial distress screening canbe made patient friendly while measuring levels ofdistress that warrant follow-up.

Psychosocial distress has received increasingattention from organizations such as the Instituteof Medicine, which described the importance ofdistress screening and noted that psychosocialhealth really is a critical component to quality can-cer care, said Nan Rothrock, PhD, Department ofMedical Social Services at Northwestern.

According to the National ComprehensiveCancer Network (NCCN), distress is a multifac-torial unpleasant emotional experience of a psy-chological cognitive, behavioral, emotional,social, and/or spiritual nature that may interferewith the ability to cope effectively with cancer, its physical symptoms, and its treatment. TheNCCN recommends that distress be recognized,monitored, documented, and treated promptly atall stages of the disease and in all settings.

COMMISSION ON CANCER SETSREQUIREMENTS FOR MONITORINGDISTRESSThe 2012 Cancer Program Standards from theAmerican College of Surgeons Commission onCancer (CoC) states that for accreditation for acomprehensive cancer center, the cancer com-mittee needs to develop and implement a processto monitor psychosocial distress and refer basedon a patient’s report of psychosocial distress.

The CoC requires that screening must occur ata minimum of once per “pivotal medical visit.”“That could be at diagnosis, transitions in treat-ment, perhaps from first-line to a second-linechemo, perhaps from radiation to chemo, or tran-sitions off treatment, or transition from curativetreatment to palliative care,” said Rothrock.

The second requirement was that the programdetermines the mode of assessment. “The pro-gram can determine what’s feasible and whatwould integrate with existing work practices attheir site,” she said.

The CoC also stated a preference for standard-ized, validated tools with established cut points.

Once screened, the CoC says that moderate orsevere distress warrants follow-up. The clinicianshould “identify and examine the psychological,behavioral, and social problems of patients thatinterfere with their ability to participate fully intheir healthcare and manage their illness and itsconsequences.”

“After having a screening measure identify dis-tress, follow up to find out what’s the source of thatdistress,” said Rothrock. “Is this person having trou-ble with child care, with financial issues, with pro-found depressive symptoms, sleep problems?”

The potential barriers to meeting these require-ments are 3-fold, said Rothrock:

• How should distress be measured?• How does one determine the level of distressthat warrants follow-up?

• How does one get the information to some-one who can do something about it?

Many distress measures exist, such as theDistress Thermometer, Hospital Anxiety andDepression Scale (HADS), and the PatientHealth Questionnaire (PHQ)-9. The single-itemDistress Thermometer is quick and easy but notalways sufficient because it lacks sensitivity andspecificity, she said.

The ideal tool is one that is brief and precise andcovers relevant issues in cancer. A computer adap-tive test (CAT) is an example of a tool that is bothbrief and comprehensive, she said.

A CAT is a collection of questions about a con-struct using the principle that a range exists withina continuum of each construct. For example, aphysical functioning item bank can range frombeing bedbound to being able to run 5 miles. TheCAT estimates a score based on the patient’sanswer to the first question, and based on thatscore, it will select the next best item.

A patient who answers that she has difficulty Nan Rothrock, PhD

“PROMIS also has cut points established by a panel of clinical experts, with limits thatdefine normal, mild, moderate, and severesymptomatology.”




walking from one room to another might nextbe asked if she is able to stand without losing herbalance. The CAT ignores questions higher onthe physical functioning construct, such as beingable to run 5 miles. The score is recalculatedafter each answer.

PROMIS: ITEM BANK FOR PATIENT-REPORTED OUTCOMESThe Patient-Reported Outcome MeasurementInformation System (PROMIS) is a publiclyavailable Web-based resource that can be used tomeasure key health symptoms and cancer-rele-vant domains (ie, pain, depression, physical func-tion, perceived cognitive function). It is fundedby the National Institutes of Health.

PROMIS measures can be used in a variety ofways, said Rothrock. “It has invested in softwareso that you can administer CATs to patients,” shesaid. “CATs are a really great idea, but if there’s noway to get a CAT in front of a patient easily it willnever be used.”

PROMIS also has cut points established by apanel of clinical experts, with limits thatdefine normal, mild, moderate, and severesymptomatology.

INTEGRATION INTO HEALTH RECORDIntegrating the information into the electronichealth record (EHR) was important “to get theinformation to the right people,” she said, as theEHR is part of the existing workflow.

“Smart” messaging – getting the message to theappropriate clinician (ie, social worker vs oncolo-gist) – was another key component.

Distress screening at the Lurie Cancer Centeruses a workflow in which patients access thepatient portal, called “Epic MyChart.” Once in thechart, patients are seamlessly navigated to theAssessment Center.

“In the Assessment Center, we have created asurvey of PROMIS measures. That information is

automatically scored and then pushed back intoEpic. And the information is located under the‘Other Orders’ section of Epic,” she said. Theappropriate clinician then receives an in-basketmessage with the results; a score in the “severe”category or a patient who identifies a need war-rants a message.

The assessment measures chosen at Lurie arePROMIS CATs, such as depression, anxiety,fatigue, pain interference, physical function,social work needs, informational needs, andnutritional status.

Patients who come to the clinic are given aniPad in the waiting room. The patient completesthe assessment on the touch screen. A screeningtriage algorithm indicates the appropriate clini-cian for a message. “If a patient has a severe scorein pain, fatigue, or physical function, his MDRand his clinical team gets an inbox message indi-cating a severe score,” said Rothrock.

“If that patient has a severe score in anxiety ordepression, his MDR and care team is still mes-saged, but we also send a message to our psychoso-cial service asking it to initiate a consult. Andthen for those practical questions about needingmore information about a given topic, we sendthose to a social worker or the nutritionist, againasking to initiate the consult.”

PILOT PROGRAM SUCCESSFULA pilot test was conducted to gauge the usabilityand administration of the assessment via an iPad.

The first pilot tested the usability of an iPad in12 gynecologic oncology patients. The assessmentconsisted of 40 questions that took about 10 min-utes to complete. All 12 patients said that theywould complete the assessment at every visit.Twenty percent required some form of assistance,most often technology assistance with the iPad orInternet connectivity.

The second pilot was a measurement of real-time workflow in the clinic. Eleven patients tookpart. It took a mean of 1.6 minutes for the regis-tration staff to distribute the iPad and check thepatient in. The average time to complete theassessment was 10.7 minutes. Sixty-four percentwere 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 easyto use, and none thought the questions to beinappropriate. Patients found the questions easy

“Patients also agreed that the questions weremeaningful and that the results were importantfor the medical team to know, although theyweren’t certain that it would result in bettermedical care. None thought the survey tooktoo long.”


A s a result of early detection and advancesin treatment, there are more than 12million cancer survivors in the United

States today, and that number will continue togrow. While this is a cause for celebration, italso highlights the increasing need for pro-grams to address the challenges survivors faceand provide them with the best quality of life.

“There is an anticipatory distress that increas-es as patients near the end of their treatment,because now they’re not actively fighting theircancer by doing these treatments,” saidRachelle Portner, RN, BSN, BA. Portner is asurvivorship nurse navigator at John MuirCancer Institute in Walnut Creek, California, acommunity-based hospital with 2 campuses and7 nurse navigators.

Both Portner and her copresenter, DebraHesse, survivorship program coordinator at St.Mary’s Regional Cancer Center in GrandJunction, Colorado, are cancer survivors andhave developed survivorship programs fortheir organizations. Although the programsare structured differently, they share a com-mon goal: to improve the lives of cancer survivors.

A COMMUNITY-BASED HOSPITAL SYSTEMPROGRAMPortner’s posttreatment experience made heraware of the lack of support for cancer sur-vivors. “The word ‘survivorship’ didn’t evenexist in a clinical setting at that time. So I hadto figure out how to do this for myself,” shesaid. Portner approached the administration inthe cancer institute and said “I want to start asurvivor program, and you need that.” Theyconcurred.

The pilot survivorship program Portner devel-oped was influenced by 2 books, Patient to CancerSurvivor: Lost in Transition and Cancer Care for theWhole Patient: Meeting Psychosocial Health Needs.Both of these reports resulted in the AmericanCollege of Surgeons (ACoS) cancer programstandards. The pilot allowed her to identify thebest ways to address survivors’ needs, which shehas incorporated into the current program alongwith the ACoS/Commission on Cancer standardsfor 2012.

John Muir Cancer Institute’s survivorshipprogram comprises the following:

Goals and service:• Acknowledge that the end of treatment



Survivorship Programs Seek to Ease Transition Back toPrimary Care

Rachelle Portner, RN, BSN, BA

Debra Hesse

to understand and mostly agreed that the surveyasked questions about aspects of health and well-being that were important to the patient.Patients also agreed that the questions weremeaningful and that the results were importantfor the medical team to know, although theyweren’t certain that it would result in bettermedical care. None of the patients thought thesurvey took too long to complete.

When asked if they would prefer to completethe surveys at home or in the clinic, 5 patientsindicated no preference, 4 chose the home, and1 chose the clinic.

LESSONS LEARNED“We learned that integration of software systemstakes longer than you think it should,” saidRothrock. “Part of the reason was that we had toget different groups – clinicians, patients, opera-tions staff, and software teams – to all meet at

the same time to agree what a shared goal wouldbe. All of those groups have competing demandson their time.”

“The second issue was that all of these groupshave their own language and their own culture,”she said. “I don’t think I understood anythingthat the software folks said for the first couple ofmeetings. We had to spend some time getting ridof acronyms and trying to talk in layperson’sterms, while still representing the complexity ofeveryone’s field.”

The other take-home lesson is that patientsare not as scared of technology as some maythink, she said. With that said, an easy-to-usedesign and a simple interface are crucial.

“Our next step is to implement this kind ofscreening for all new patients who are receivingtreatment,” she said. “We need to set up a sched-ule for follow-up assessments so we can monitordistress over time.” g




can be a time of both physical and psycho-logical challenges

• Develop a program to decrease psychologicaldistress and address physical and practical sideeffects of treatment

• Support each patient in achieving the highestpossible quality of life after treatment

Program components:• Distress screening and follow-up. The insti-tute elected to use a modified version of theNCCN distress thermometer. Portner ex -plained that the “Distress Screening” title wasmodified when research showed that the word“distress” was viewed negatively by patients. Itwas replaced with “How Are You DoingToday?” According to Portner, radiationoncology nurses use the distress thermometerto screen patients when they first come intothe clinic for their education simulation, andat the end of their treatment about 7 daysbefore they’re finished. Patients whose screen-ings reveal clinical evidence of moderate orsevere distress (level 4 or more on distressscale, as defined by NCCN guidelines) areevaluated by their oncology team (managingphysician, nurse navigator, nurse, oncologysocial worker) and connected to the appropri-ate referral for care

• Quality-of-life assessment. “I use that quality-of-life assessment to populate all the informa-tion and interventions that go into that careplan,” said Portner, adding that she and thepatient will spend as much time as is needed togo through each intervention

• Health promotion and wellness information.Available from the American Cancer Society

• Community outreach and education. In -cludes health fairs, screenings, and nursingsurvivorship education seminars

A RURAL COMMUNITY CANCER CENTERSURVIVORSHIP PROGRAMSt. Mary’s Regional Cancer Center is in GrandJunction, on the rural Western Slope of Colorado.In 2006, the hospital received a grant from theLance Armstrong Foundation to establish and staffa cancer survivorship program in association withthe LIVESTRONG Survivorship Center ofExcellence Network. Five years prior, Debra Hessewas diagnosed with melanoma, which led her tobecome a volunteer in the Cancer Center. Whenthe grant was received, Hesse became the survivor-ship program coordinator.Hesse said that when she became the coordina-

tor, survivorship was a new concept. “People didn’tknow what survivorship was. I was always lookingfor the big boat that’s gone before me and kind ofcleared the path so I didn’t have to reinvent thewheel, and it really wasn’t out there.” It took Hesse5 years, patience, and the 47 volunteers she super-vises to develop the program and establish theSurvivor Resource Center.St. Mary’s Regional Cancer Center core sur-

vivorship program components include:• Cancer survivor resource center. Providesfree educational books and pamphlets,online research assistance, and audiovisualresources in both English and Spanish thataddress the medical, emotional, and practi-cal challenges faced by cancer survivors.Also, the center provides a computer withInternet access for patients, a “bookexchange” shelf, and free hats and scarvesfor those who have lost their hair

• Support and education. Art therapy pro-gram, 10 support groups and classes, Canyonshealing retreats

• Community outreach program. Health fairs,skin cancer screening, community educationtalks

St. Mary’s is working on transitioning into anurse navigator model utilizing a distress scale toidentify patients who are in need of additionalservices and are also working on the implementa-tion of electronic medical records to include thedata points of a treatment summary and care planinto their new software, according to Hesse. “Weare trying to determine the best way to close theloop, so our patients can transition their care fromtheir oncologist back to their primary care physi-cian,” she said. g

“People didn’t know what survivorshipwas. I was always looking for the bigboat that’s gone before me and kindof cleared the path so I didn’t have toreinvent the wheel, and it really wasn’tout there,” Hesse said.




The Navigator Matrix

A t the second annual AONN Navigationand Survivorship Con ference, KarylBlaseg, RN, MSN, OCN, of the Billings

Clinic Cancer Center; Tricia Strusowski, MS,RN, of the Helen F. Graham Cancer Center; andJay R. Swanson, RN, BSN, OCN, of the SaintElizabeth Cancer Institute presented TheNavigator Matrix.Designed to assist in standardizing navigation

programs, the matrix is a tool that can also helpdetermine what can be done to meet the needsof patient populations. Blaseg, Strusowski, andSwanson presented the following 16 navigationprogram building blocks, each containing 5 lev-els of qualification.KEY STAKEHOLDERS are those individu-

als essential to making your program work(administration, navigators, staff, physicians,and specialty medical personnel). The operat-ing levels of this aspect range from strictlyadministrative program support (Level 1) up toa navigation program that receives referralsfrom MDs, PCPs, or community partners(Level 5). The answer to growing a program’skey stakeholders, according to Swanson, isoftentimes the acquisition of a championphysician, or a “gatekeeper,” willing to connect anavi gator to the patients.COMMUNITY PARTNERSHIPS are those

entities that exist within and outside the naviga-tion program that contribute to the support of thepatient or are a referral source for the patient.According to Swanson, “You can’t exist withinyour own program if you’re not able to meet all ofthe needs of your patient. And that’s going torequire a whole cadre of internal and external sup-porters that are going to be able to help you withthat.” This building block includes partnershipswith 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 patientneeds. This area of the program includes formalassessment tools, a well-defined referral process,and other proactive approaches so there are nogaps in patient services.QUALITY IMPROVEMENT, or METRICS

AND REPORTING MEASURES, involvesmeasuring program performance. In other words,

using reports to establish the importance of theprogram so that others may see the benefits ofnavigators. At a Level 5 for this building block,a program would have multiple quality improve-ment initiatives in place and monitored todemonstrate program improvement, financialcontribution, and cost-saving services. The MARKETING aspect of the navigation

program matrix ranges from basic word-of-mouth program marketing (Level 1) to pam-phlets (Level 2) to health fairs and other multi-ple media sources (Level 5).The process of getting the information out to

the physicians’ and the surgeons’ offices so thepatients come into the facility knowing there’s anavigator available for them is the sixth buildingblock, PERCENTAGE OF PATIENTS OFFER -ED NAVIGATION.The seventh building block, CONTINUUM

OF NAVIGATIONAL CARE includes out-reach/screening, abnormal finding to diagnosis,treatment, outpatient and/or inpatient, sur-vivorship, and end-of-life care. A Level 5 pro-gram provides patient navigation continuouslyacross the cancer care continuum.The next navigation program building block

is SUPPORT SERVICES available and used bythe navigation team. These resources are numer-ous and include dietitians, social workers, psy-chologists, clinical trials, physical/occupational/speech therapists, pastoral care, oncology rehab,financial counselors, palliative care, geneticcounselors, etc.REPORTING STATISTICS involves docu-

mentation designed to evaluate and measure thenavigation program. Levels within this matrixblock range from paper patient charts (Level 1)to homegrown spreadsheets (Level 2) to formalhospital electronic medical records in which allsupport services provided to the patient are doc-umented (Level 5).FINANCIAL ASSESSMENT of patients in

the navigation program is almost as important asthe physical assessment. The expenses for notonly medical care and treatment but also theadditional costs associated with the effects onlife change are dramatic for patients. A Level 5navigation program will have proactive financialassessment completed for all oncology patientsplus data collection completed on types of serv-

Karyl Blaseg, RN, MSN, OCN

Jay R. Swanson, RN, BSN, OCN


AONN CONFERENCE

PROCEEDINGS


S ignificantly high levels of physicians andother medical professionals believe thatcompassion in healthcare makes a signifi-

cant difference on whether the patient lives ordies. And yet, of physicians who were polled notlong ago, only a little more than half believed thatthe system is actually compassionate today. RobbJohnson, director of programs for the SchwartzCenter for Compassionate Healthcare in Boston,addressed this poll and how it ties in with the com-passion concept and the work of the center.Set up in 1995, the center carries out the vision

of Ken Schwartz, a healthcare attorney who diedof lung cancer at age 40, who suggested that whatmeant the most to him as a patient was the com-passionate care he received from his caregivers.One notable program at the center is known

as Schwartz center Rounds, a forum that allowsprofessional caregivers from a diversity of disci-

plines to get together to address difficult emo-tional and psychosocial issues pertaining topatient care and develop strategies for addressingchallenging cases. “Caregivers can learn new strategies for treat-

ing patients more compassionately while provid-ing support to one another and building strongerteams. This is really a provider-directed programfor providers,” says Sean Walsh, the executivedirector of AONN.According to Walsh, it’s essentially a 1-hour

program at lunchtime. The Schwartz Centerbasically provides a type of training orientationprocess for a hospital to undertake, and thenthey run the training program with a planningcommittee located within that facility.The training sessions run 6 to 12 times a year.

It’s an interdisciplinary forum and is cross-disci-plined; it creates an interactive discussion across

Compassionate Care Helps Drive Better PatientOutcomes

Robb Johnson

ices provided and number of patients assisted ona regular basis.A benchmark navigation program will FOCUS

ON DISPARITIES. This entails providing out-reach and effort to any underrepresented popula-tion in the community. Further more, this focusincludes cancer cultural awareness among staff,with cultural objectives created on at least anannual basis.While maintaining a central core responsibility

of patient assistance, NAVIGATOR RESPONSI-BILITIES must grow as a program evolves. FromLevel 1, when the navigator is responsible only forthe support of the patient to Level 5, when respon-sibilities expand to support groups, tumor confer-ences, audits, and strategic planning, the primaryfocus is always the patient.Another navigation program building block is

the PATIENT IDENTIFICATION PROCESS.Navigators have to find a way to interact with theirpatients. This is the process of developing from aprogram that has to search for patients (Level 1) toa program receiving referrals from a PCP at thetime of an abnormal finding (Level 5).To ensure a high quality of care and commit-

ment, NAVIGATION TRAINING is essentialto any program. This involves defining corecompetencies of navigation, local training for all

navigators, and finally, formal training and certi-fication by nationally recognized programs.With clinical trials being a major part of the

advancement of cancer care, it is important thatnavigation ENGAGE WITH CLINICAL TRI-ALS to offer patients the best possible care. ALevel 5 program will have a trained navigatorsharing trial information with patients, engagingwith research teams, and assisting with specifictrial referrals for underserved populations.The final navigator program building block is

MULTIDISCIPLINARY CARE. This means theplan of care for the patient involves a multidisci-plinary team approach including physicians andother healthcare providers. A benchmark naviga-tor program includes the navigator and patient on the multidisciplinary team. The patient isinformed of the case presentation, the patientreceives a full report on the treatment plan dis-cussion, and formal audits are completed.Programs throughout the country are already

using the 16 building blocks of this tool as ameans to establish the importance of the pro-gram and improve quality. In closing, Swansonencouraged those in attendance to use thematrix as a foundation to advance current pro-grams and move forward with improvements inpatient navigation. g



AONN CONFERENCE

PROCEEDINGS

disciplines. The program is focused on the psy-chosocial aspects, or the heart or emotional sideof the work, not on clinical problem solving.Patients and families do not generally attend,

but once a hospital or clinical setting has theRounds running, they are encouraged to invite apatient or family group into a Round to actuallyshare their story, so that can be kind of a cross-fertilization of ideas, according to Walsh.On another front, the Schwartz Center

recently began piloting a program with CRICO/RMF (Controlled Risk Insurance Co/Risk Man -agement Foundation), the insurance companyfor Harvard teaching hospitals. They are work-ing with clinicians on a project in which all thecases that are used in case discussions are basedon actual closed malpractice cases. And 70% ofclaims are actually based on breakdowns or prob-lems in the communication between providerand caregiver, possibly situations that may lackin compassion.Robb Johnson, director of programs for the

Schwartz Center, says that it is possible that theprofession’s compassion can be impeded by a neg-ative source of energy, burnout. He says one meas-ure of burnout in healthcare provider populationsis the Maslach Burnout Inventory, which consid-ers various measures. One measure is emotionalexhaustion, which essentially means you are atthe point where it is becoming difficult to engageor to assert your needs with others. Anothermeasure is depersonalization, which can be meas-ured by negative pessimistic attitude, maybe hos-tility or hostile behavior toward your coworkers ortoward your family, and a lack of a sense of per-sonal achievement.“From my past direct work experiences with

people with HIV and AIDS and with victims andsurvivors of violence, there were times when I feltlike I had light shining out of my head and Ithought, ‘I’m doing good work.’ And there wereother times when I was so conscious that what Ijust said or what I just did fell flat or was the wrongthing at the wrong time,” Johnson says, relating tothe depersonalization measure.He adds, “For me, the unfortunate part of my

personality is I tend to remember the ones thatdidn’t go so well a lot longer than I rememberthe ones that went well. But we don’t need hero-ic performances all the time. It’s impossible to beon 100% or perfect all the time.”He suggests that what medical professions

really need is to develop a system of copingstrategies and support that will keep you going. Johnson queried his audience about times

when they felt like they were heading towardburnout. He asked for audience members toshare personal strategies used to help bring themback to where they could devote energy andenthusiasm to life or to work again.

He asked a second question of the audience:“What are a couple of things at your workplaceor perhaps your family system that your socialsystem has done that have helped you cope andstay engaged and avoid burnout?” The first ques-tion is a personal strategy; the second one is asystem support strategy.One audience member, Patty Grow, RN, MSN,

FNP-C, family nurse practitioner and patient nav-igator from University of Texas Medical Branch atGalveston, works in the breast cancer area of thebranch. At her facility, she says one of the strate-gies 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 wetake care of ourselves. Sometimes we pray withthe patients as well. I’m also a survivor, and thisis one strategy that works for us,” she says. According to Johnson, a significant evaluation

of the compassionate care–based program was pub-lished in the Journal of Academic Medicine last June. “What we found was that people were coming

away with concrete strategies for dealing withchallenging situations, and they were feeling, atleast by self-report, that they had an enhanced orrenewed compassion for folks,” Johnson says.A high percentage reported a greater apprecia-

tion for what their colleagues do, and they feltmore a part of a caregiving team. And a signifi-cant number reported feeling less alone in theirwork, according to Johnson. g

“Caregivers can learn new strategies fortreating patients more compassionately whileproviding support to one another and build-ing stronger teams. This is really a provider-directed program for providers,” says SeanWalsh, the executive director of AONN.


Faces at the

conFerence


A View From San AntonioSecond Annual Navigation and Survivorship Conference



Faces at the

conFerence

Photos by JOWDY Photography


AONN KeyNOte

SpeAKerS


ADVOCACY KEYNOTEAndy Miller, MHSE, CHES, Vice President ofMission for LIVESTRONG, delivered the advo-cacy keynote address at our second annualAONN Navigation and Survivorship Con ferencein September. Miller oversees LIVESTRONG’sstrategic direction and daily opera-tions of its programmatic activities,including grants and partnerships,direct services for those affected bycancer, and implementation of thefoundation’s cancer policy platform.In his address, Miller discussed

how the organization’s mission is to“inspire and empower people affect-ed by cancer.” One of the key priori-ties of this LIVESTRONG missionis to assist cancer patients in navigating survivor-ship. For the foundation, this means providingfree, confidential, one-on-one support to anyoneaffected by cancer, be it the person who is diag-nosed, patients’ loved ones, or patient caregivers.Since 2004, LIVESTRONG has been providingnavigation services that focus on emotional sup-port; fertility risks and preservation options;insurance, employment, and financial concerns;and treatment concerns. In 2009, the foundationopened the LIVESTRONG Cancer NavigationCenter in Austin, Texas, where they continue tohelp people with any cancer type and at any stageof treatment. In fact, in 2010, the LIVE-STRONG organization assisted over 11,000individuals, provided more than 38,000 services,and saved individuals more than $3 million bynegotiating discounts and providing funds.In his closing remarks, Miller stated, “LIVE-

STRONG is an organization that is not aboutcancer. It’s about people. It’s about people affect-ed by cancer.” In much the same way, AONN isnot about cancer, but rather about people affect-ed by cancer as we strive to achieve our vision to“increase the role of and access to oncology nurseand patient navigators, so that all cancer patientsmay benefit from their guidance, insight, and per-sonal advocacy.”

SURVIVORSHIP KEYNOTEOur very own editor-in-chief, Lillie Shockney,delivered the survivorship keynote address.Shockney is a registered nurse with a BS in

healthcare administration from Saint Joseph’sCollege and a master’s degree in AdministrativeScience from the Johns Hopkins University. Sheis a founder of AONN and a published author of13 books and over 200 articles on the subject ofbreast cancer.

In her address, Shockney led conference attend -ees on a journey through some of her personalexperiences with breast cancer. The audience washeld captivated by many heartwarming and oftenentertaining stories of breast cancer survivorsShockney has encountered throughout her life.Audience members also listened closely asShockney talked about her own breast cancer diag-nosis at the age of 38 and her subsequent mastec-tomies. Not only did Shockney discuss the impactof cancer on her body physically, but she alsoshared some of the emotional hurdles she clearedas a cancer patient and survivor. Included in herstory were those individuals who positively influ-enced her treatment journey.Today, Shockney considers it a privilege to

spend her time taking care of women who arefacing a breast cancer diagnosis. As a result, shehas been working diligently the past 3 years ondeveloping a survivorship program in whichnavigators assist in meeting the emotional andphysical needs of cancer survivors. For instance,while a patient’s treatment summary is valuable,Shockney says, it is just as important to discuss apatient’s care plan, including the physical symp-toms and psychosocial issues she may encounteralong her journey. Supplying steadfast support topatients throughout treatment is another crucialcomponent of a survivorship program. And,when the treatments are complete, Shockneybelieves it is the responsibility of navigators tohelp survivors reengage in their lives both emo-tionally and physically.g

Andy Miller, MHSE, CHES

Lillie Shockney, RN, BS, MAS

“While a patient’s treatment summary isvaluable,” Shockney says, “it is just asimportant to discuss a patient’s care plan,including the physical symptoms andpsychosocial issues she may encounteralong her journey.”

Inspiring Strong Survivorship Care


Journal of Oncology

The Official Journal of the Academy of Oncology Nurse NavigatorsNAVIGATION & SURVIVORSHIP

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SECOND ANNUALCONFERENCE ABSTRACTS


Breast Nurse Navigator Role Impacts Cancer Patients and the Healthcare TeamLoril 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, andthe multidisciplinary team. Methods: The BNN met with patients who had a confirmed breast cancer diagnosis and followed themthrough treatment into survivorship. The BNN performed a needs-based assessment with each interaction resulting in individualizedinterventions throughout the care continuum. Satisfaction surveys were developed to measure service impact of the BNN program usinga 5-point scale (5 highest, 1 lowest). All patients served (155) in the first 6 months of the program were surveyed. Patients rated theimpact 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 completeda satisfaction survey. They were queried about how well the BNN removed barriers to treatment, helped expedite appointments, coor-dinated care, involved the healthcare team, facilitated access to research, and provided patients with explanations about what toexpect during their treatment. Open-ended questions were also part of the survey. Input was solicited from both patients and the mem-bers of the healthcare team on what was going well with the BNN role and if anything could be improved upon. Results: The patientsatisfaction 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 theBNN role. Conclusion: Breast cancer care, which is delivered by multiple providers over an extended period of time within an alreadyfragmented healthcare system, has led to persistent gaps in the care process. The role of a BNN serves to bridge those gaps andassures that the quality of a patient’s care and experience is optimized in the process, which was demonstrated. Discussion: Increasingnumbers of cancer treatment programs are employing the use of nurse navigators as a strategy to improve patient satisfaction, the effi-ciency of the care process, and adherence (NCONN, 2009). Breast cancer treatment and care can be improved by recognizing thevalue the nurse navigator role brings to the patient experience and enhancing that role (Korber et al, 2011).

CATEGORY IV: Original Research

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

A Path to Improving the Continuum of Care: Developing a Survivorship ProgramA. 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 AnneArundel Medical Center (AAMC) we implemented these fundamentals in the development of our breast survivorship program. Thisabstract outlines fundamental steps in the process. Methods: First, a needs assessment was conducted using data from our tumor reg-istry. We conducted a literature review including the Institute of Medicine’s report “Lost in Transition: From Cancer Patient to CancerSurvivor” and research from the NCI’s Office of Cancer Survivorship. Consistent with the nation, we found a growing volume of can-cer survivors living longer and needing assistance. Training and networking were critical in the program development as well. AAMCstaff attended George Washington’s Executive Training on Navigation and Survivorship. This 2-day seminar helped define a frame-work and featured organizations with operational survivorship clinics. Next, a project team was created and included a nurse practi-tioner, 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, dis-ease 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 implementa-tion of our survivorship clinic. The breast survivorship clinic visit consists of a consultation with the nurse practitioner and oncology socialworker. Patients receive a “Survivor Path” that serves as a care treatment summary, including diagnosis details, comorbidities, treat-ments, and providers. It is vital that this Survivor Path is provided to primary care providers and other professionals from the care teamin order to provide seamless care. In addition to creating the program, we were tasked with marketing the program. Promotional mate-rials were made available to patients in waiting rooms of oncology providers. “Lunch and Learn” sessions were coordinated to estab-lish a dialogue with primary care offices. A presentation of the survivorship program was conducted for all disciplines at a “tumorboard” conference to ensure an understanding across departments within the health system. Conclusion: Finally, it is necessary to pro-vide ongoing assessment and evaluation to improve and expand the program. The ultimate success of the program will rely upon ongo-ing executive sponsorship, objective evaluation, sustainable funding, and most importantly, tangible patient benefits.

CATEGORY III: Tracking Processes Across the Continuum of Care




Streamlining Navigation for Urban and Rural Communities in TexasMelanie 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 anyother part of Texas. An estimated 55,000 women from these counties have never received breast cancer screening. Objectives: TheBreast Screening and Patient Navigation (BSPAN) program developed in Tarrant County has been effectively duplicated in the surround-ing, underserved counties. The program includes: (a) outreach and breast health education; (b) providing screening services within thepatient’s home county; (c) oncology RN navigation of abnormal results to increase the speed to diagnosis and treatment, and (d) acquir-ing and maximizing funding to reduce financial barriers. Our program utilizes funds from Susan G. Komen Foundation, CancerPrevention 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 BSPAN’s effectiveness tracking 3 outcomes over 12 months:a) Number of mammograms providedb) Time to clinical resolution or treatment of abnormal resultsc) 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 theprogram 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 resultingin 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. Breastcancer has been confirmed in 68 women, and 75% of the breast cancers were found at early stage. BSPAN provided services tounderserved and medically disadvantaged counties in North Texas with minimal staff, including an OCN nurse manager, 3 oncologynurses, clinic staff assistant, and billing specialist. The BSPAN program has shown that statewide duplication is feasible with the strate-gic appropriation of funds and staff. Education for women in rural counties continues to be essential, as reflected in the high percent-age waiting until symptoms to initiate mammography.

CATEGORY V: Screening Programs for the Underserved




From Breast Cancer Screening to Definitive Diagnosis: Strategies for Successfully Serving the UnderservedDawn 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 ofdelayed diagnoses. Breaks in cancer care impact survival rates and quality of life. The Seton Healthcare Family, the only NCICommunity Cancer Centers Program (NCCCP) site in the Southwest, has provided breast cancer care spanning the full cancer contin-uum to low-income and uninsured women across Central Texas since 1987. Objectives: This presentation discusses Seton’s successfulefforts 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 witha lost-to-follow-up rate less than 1%. Methods: Seton’s mobile mammography program, with support from Komen for the Cure Austinand the National Breast Cancer Foundation, couples screening mammography with breast health education and clinical breast examby specially trained RNs. By offering culturally appropriate, free breast services in partnership with respected community sites, Setonprovides accessible services to underserved women in their communities. Women with abnormal results are navigated to definitivediagnosis 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 participantsHispanic, 26% non-Hispanic Caucasian, 13% Asian, and 5% African-American. A total of 203 women had an abnormal result, andall were navigated to a definitive diagnosis. Grants covered costs of nearly 700 diagnostic procedures and more than 300 physicianoffice visits. Women progressed from abnormality detection to definitive diagnosis in an average of 24 days. The program also aver-ages a 38% screening return rate over the past 5 years. Conclusions: Seton’s breast cancer screening program is a community-centric ini-tiative 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-riskunderserved populations. Seton’s model has been shared with other NCCCP sites and is replicable by other organizations.

CATEGORY V: Screening Programs for the Underserved



contents

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www.AONNonline.orgAONNAsizeJONS_83011

Best Practices

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A selection of member-submitted best practicesfor others to learn from and comment on.

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Nurse & Patient Navigator Association

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

Networking OpportunitiesCoordinated events throughout the year both in person and online to help you connect withmembers and leaders.

Expert Opinion BlogsThought-provoking articles from the leadersin navigation and survivorship on varioussubject areas.

Community ResourcesA collection of resources to help you and yourpatients better navigate their cancer treatment.

PublicationsSubscriptions to the Journal of Oncology Navigation & Survivorship® and The OncologyNurse®-APN/PA.

� �� JONS_November 2011_v6_JONS_November 2011 11/16/11 11:56 AM

BREAKOUTSESSIONS


Those in attendance at the AONN secondannual meeting had the opportunity to attendbreakout sessions focused on navigation

strategies in the following subject areas: breast can-cer, lung cancer, gastrointestinal (GI) cancer,prostate cancer, multi-tumor types, as well as themanagement of a navigation program. It is ourpleasure to offer the following summaries and take-home points from each session.

BREAST CANCER NAVIGATION: 5 STEPSTO BETTER NAVIGATIONSue Bowman, RN, OCN, CBCN, MSWLeesa Mattingly, RN, OCN

The breast cancer sessionfocused on the use of the Nurs -ing Process to guide navigationfor people with breast cancer. Areview of the Nursing Processtheory was aligned to naviga-tion using As sessment, NursingDia gnosis, Creating a Plan ofCare, Im plementing the Plan,and Evaluating the Plan. Prac -tical application of the NursingProcess was described in relationto the steps of comprehensivenavigation such as preparing foran initial assessment, building arapport with the patient, andengaging the patient in theircare. Promotion of a team

approach and use of available resources for holisticcare include the patient, physicians, and support-ive services and was delineated. Developing logi-cal ways to identify individual barriers and barrierresolution was discussed. The 2012 ACoS CoCStandards were reviewed in relation to the naviga-tion, psychosocial assessment, and survivorshipstandard requirements. The Nursing Process wasapplied to developing individualized survivor pro-grams in a way that participants could identify aneed in their community and use that as a focus fortheir program. Interactive activities like BarrierBalls and Case Study kept the audience enter-tained and thinking in terms of practical tools andpatient intervention.

Take-Home Messages• Patient navigation is exemplified by theNursing Process theory

• All aspects of the navigation process can beaddressed by applying the Nursing Processtheory

• Navigation teams can be assembled withreadily available resources, whether a con-crete or virtual design

• ACoS CoC accreditation standards can beincorporated into any navigation program

• To be successful, survivorship programs aredesigned around patient need

LUNG CANCER NAVIGATIONPamela Matten, RN, BNS, OCNKaren Overmeyer

As one of the most lethalcancers in the world, lung can-cer presents numerous chal-lenges in diagnosis and man-agement. New evidence fromthe National Lung ScreeningTrial indicates that screeningwith low-dose CT may provideopportunity to detect lung can-cer at earlier stages. This break-out session highlighted the roleof the thoracic oncology nursenavigator in prevention andscreening, and the importanceof early detection of cancerwith regard to diagnosis andtreatment options. One of themultifaceted roles of the nurse

navigator includes coordinating a multidiscipli-nary conference and clinic, putting all disease-specific specialists together at one time andplace to decide on a comprehensive treatmentplan. Nursing navigation serves to expedite thepathway from suspicion to diagnosis and diagno-sis to treatment on through to survivorshipand/or palliative care, while collaborating withinvolved clinicians, keeping the patient and fami-ly at the helm of decision making. Case study pre-sentations typified how the thoracic oncologynurse navigator weaves his/her role throughout the

AONN Breakout Sessions

Sue Bowman

Leesa Mattingly

Pamela Matten

Karen Overmeyer



BREAKOUTSESSIONS

continuum of care, collaborating among cliniciansand points of patient contact, providing supportand education, and monitoring patients for sideeffects and effectiveness of therapies. In closing,the breakout session included a glimpse at thedevelopment of new frontiers in the treatment oflung cancer with respect to novel targeted agentsand the use of molecular biomarkers.

Take-Home MessagesThe role of the thoracic nurse navigator:• Impacts prevention through education abouttobacco cessation and intervention for earlydetection of lung nodules through low-doseCT screening programs

• Expedites the pathway from suspicious find-ing to diagnosis and treatment

• Coordinates care to reduce duplication ofservices while collaborating with disease-spe-cific clinicians

• Serves as a vital one-point-of-contact link tosupport services, education, and resources

• Provides leadership and mentoring by trans-lating into practice the expanding arena ofnovel treatments for lung cancer

GI CANCER NAVIGATIONCoralyn Martinez, MSN, RN, OCNNicole Messier, RN, BSN

The goal of the GI cancernavigation break out sessionwas to provide an in teractiveforum for navigators to discusscurrent successes and ob staclesin developing and main taininga successful GI navigation pro-gram. An over view of 2 GImulti disciplinary programs wasprovided followed by smallgroup breakout discussion.The small group discussionfocused on types of naviga-tion, developing focused nav-igation and programmaticgoals, documentation, refer-ral patterns, re sources, andmeasuring success.

Take-Home Messages• Develop a consistent process – Con sistencyis the key to success; development of a stan-dard job description with clarification ofthe role and a reproducible navigationmodel is the starting point

• Provide clear communication to patients andproviders – Verbally and in writing, everyoneneeds to be in the know regarding the planand any changes that may come about

• Be alert to red flags – Identifying and re -moving barriers to care will facilitate timelyservice

• Use quality standards and guidelines –Using best practice standards, such asNCCN guidelines, ensures appropriate andquality staging and treatment

• Measure your success – The use of data basesand QA projects can help prove and justifythe importance, need, and value of your roleas a nurse navigator as well as your program

PROSTATE CANCER NAVIGATIONFrank delaRama, RN, MSN, AOCNS

The prostate cancer naviga-tor breakout session fo cused on 2 main areas: (1) programdevelopment/maintenance,and (2) shared decision mak-ing and role of the navigator.Through sharing the story of

the development of the pro statecancer care program at Palo

Alto Medical Foundation, many strategies andideas were identified that can help grow and main-tain a program of excellence, with the navigatorleading the way.

Take-Home MessagesThe tasks of the prostate cancer nurse navigatorcan be divided into 5 fundamental themes:• Helping physicians and other healthcareproviders

• Helping patients directly with support andadvice

• Helping the population (eg, communityawareness of prostate cancer)


Coralyn Martinez

Nicole Messier

Frank delaRama


BREAKOUTSESSIONS


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

MULTI-TUMOR TYPE NAVIGATIONShanna Gillming, RNJay R. Swanson, RN, BSN, OCN

The goal of our breakout ses-sion was to have an open discus-sion regarding concerns withmulti-tumor site navigation,identify potential best practices,and review some case studieshighlighting the strengths anddifficulties of multi-tumor sitenavigation. We wanted to havean open discussion with eachnavigator involved.

Take-Home Messages• Multi-tumor site navigationdoes have its own benefits,and multi-tumor site naviga-tion is the ideal situation forcertain institutions

• Multi-tumor site navigation also has somedownsides

• It is helpful to network with other multi-tumor site navigators to share resources

• We would like to explore the idea of a com-munity within AONN for multi-tumor sitenavigators to network

MANAGING A NAVIGATION PROGRAM:THE ROLE OF ADMINISTRATORSPhyllis DeAntonio, RN, MSN, FAAMAMarie DeStefano, RN, MSN, FAAMA

Patient navigation is all the buzz in healthcaretoday. Every patient with an abnormal finding,whether malignant or not, wants a nurse naviga-tor to guide them through this complex business

we call health care. Navigationis as different and unique as theinstitution where the care isdelivered, including the title ofthe navigator. In some institu-tions they are known as “nursenavigators,” and in others,“patient navigators.” Theyhave been called “patient carecoordinators,” “case managers,”and “patient care navigators.”Re gardless of their title, therole remains the same. The pur-pose of the navigator is to assistthe patients in receivingprompt quality care during thischallenging time in their life inorder to achieve the best out-come. While the overall goals are better patientoutcomes, in an environment where justificationof new positions is a constant challenge, it isimportant to gain support from administration forthe ongoing success and funding of this position.

Take-Home MessagesSome key points from an administrative view toremember about nursing navigation are:• Evaluate the gaps in your system for betterutilization of the navigator

• Establish relationships with referring physicians

• Establish a point of contact for the patient,whether imaging, physician referrals, self-referrals, or pathology

• Remember, a navigator does not work in iso-lation but is part of the team approach

• Establish volume baselines for ongoing mon-itoring of out-migration and the ability tomaintain patients

• Report statistics to administration on a timely basis for ongoing justification ofposition

• Report patient satisfaction; satisfied patientsare the best marketers for the institution

• Set realistic goals for patient volumes g


Shanna Gillming

Jay R. Swanson

Phyllis DeAntonio

Marie DeStefano



Thank You to All Our Conference Supporters!AONN would like to express its sincere gratitude to all of the companies and organizations that supported ourSecond 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.

AMGENwww.amgen.com

AMOENA USA CORPORATIONwww.amoena.us

CELGENE CORPORATIONwww.celgene.com

CENTER OF EXCELLENCE MEDIA, LLCwww.coexm.com

HEALTH MONITOR NETWORKwww.healthmonitor.com

JANSSEN BIOTECH, INC.www.janssenbiotech.com

LIVESTRONGwww.livestrong.org

LYMPHEDIVAS, LLCwww.lymphedivas.com

NURSE ONCOLOGY EDUCATION PROGRAMwww.noep.org

NURSENAV ONCOLOGYwww.nursenav.com

ONCOMEDwww.oncomed.net

PATIENT ADVOCATE FOUNDATIONwww.patientadvocate.org

PRIORITY CONSULTwww.priorityconsult.com

REPROTECH LTDwww.reprotech.com

THE ONCOLOGY NURSE®-APN/PAwww.theoncologynurse.com

VIDACARE CORPORATIONwww.vidacare.com

THANK YOU

PLATINUM SPONSORS

www.pfizeroncology.com www.millennium.com


GUIDELINES


On October 26, 2011, lung cancer screen-ing guidelines were published by theNational Comprehensive Cancer

Network (NCCN). The guidelines became nec-essary after data from the National LungScreening Trial (NLST), sponsored by theNational Cancer Institute, showed that screeningwith low-dose computed tomography (CT)decreases disease-specific mortality by 20% andall-cause mortality by 7% when compared tochest x-ray alone.1Currently, the 5-year survival rate for lung can-

cer is only 15.6%.2 This is because lung cancer isusually discovered at a late stage when symptomsappear. In most cases, this is too late for curativetreatment. CT screening could prove pivotal inchanging the course of lung cancer for many in -dividuals. In 2011 alone, it is estimated that156,900 deaths from lung cancer will occur in theUnited States.2The NLST findings and the publication of

NCCN lung cancer screening guidelines couldbe a turning point in early diagnosis of lungcancer. This research and publication areextremely significant and pave the way forfuture adoption of public and private insurersproviding coverage for lung cancer screeningfor individuals considered “high risk” for lungcancer. Please see the NCCN guidelines for adefinition of “high risk.”3The US Preventive Services Task Force

(USPSTF), a federally funded and appointedpanel, evaluates screening data and makes rec-ommendations for screening. The USPSTF isslated to review the lung cancer screening datanext year. Its recommendations are not manda-tory in order to set clinical standards for man-agement, but they are often used by public andprivate insurers to determine coverage.Throughout November, Lung Cancer Aware -

ness Month, it is fitting to celebrate the recentfindings of the NLST and the adoption of clin-

ical practice guidelines for lung cancer screen-ing. For too long, smokers have been stigma-tized when given a lung cancer diagnosis. Notonly is it discriminatory to the patients who areaddicted to nicotine, but it is also an inaccu-rate portrayal of the disease. In fact, data fromthe Centers for Disease Control and Pre -vention in 2006 showed that 60% of lung can-cer patients had already quit smoking and17.8% had never smoked.4Lung cancer patients deserve our attention,

support, compassion, and action. As nurse naviga-tors it is our duty to be advocates for our patients.We can do this by promoting and implementinglung screening programs at our institutions. Wehave evidence now to show that it saves lives. Wehave NCCN guidelines to follow for diagnosisand surveillance. Determination of coverage isforthcoming. Mammogram reduces mortalityfrom breast cancer by 15%, and given the NLSTfindings that CT lung screening reduces mortalityby 20%, it is likely to become a covered service.Imagine if a decade from now, the adoption

of CT lung screening in the United Statescould raise the 5-year survival rate for lungcancer from 15% to 50%. I challenge nursenavigators to be the catalyst for change intheir institutions. Pick up the torch and carryit for all the lung cancer survivors – past, pres-ent, and future – that you touch through navi-gation. You have an opportunity to screenpatients for this deadly disease and detect lungcancer in its earliest stages, when it is treatableand curable. Make a difference in yourpatients’ lives and at the same time be a part ofhistory in the making!g

REFERENCES1. 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.

LUNG SCREENING GUIDELINESPUBLISHED BY NCCNBy Pam Matten, RN, BSN, OCNThoracic Oncology Program, St. Joseph Hospital, Orange, California



VIEWPOINT

Opinions are varied regarding how “sur-vivorship” should be defined by pa -tients and oncology specialists. There

are also mixed opinions about when a patientactually becomes a “survivor.” Is it from themoment of diagnosis? Or should a person beconsidered a survivor at the time of completionof acute treatment (surgery, chemo, radiation)?Some consider a survivor to be one who hasachieved the 5-year mark posttreatment.However, how we as clinicians view this mile-stone of sorts impacts how we apply survivor-ship. Just as the character George Bailey in themovie It’s a Wonderful Life has the unique oppor-tunity to see how the world would be different ifhe had never entered it, my goal is to show howthe life of a patient can be dramatically differentwith the application of effective survivorshipcare. These fictional case studies are created as ateaching tool to depict the outcomes when wechoose to apply survivorship care at the end ofacute treatment or even later versus applying itfrom the point of diagnosis.

CASE STUDY: ABSENCE OFSURVIVORSHIP CAREA 35-year-old woman was diagnosed with stageIIb breast cancer. She wanted surgery done soonand to undergo surgery once rather than havingstaged reconstruction. She declined neoadju-vant chemotherapy first. Tumor was ER positiveand HER2 negative. She underwent a left mas-tectomy with reconstruction (bilateral deepinferior epigastric perforator [DIEP] flap) andprophylactic mastectomy on the right side, leftaxillary node dissection, chemotherapy (doce -taxel/cyclophosphamide), and radiation, withhormonal therapy for 5 years.Outcomes:• She developed range-of-motion complica-tions that warranted extensive rehab medi-

cine therapy. Several years later she continuesto have problems with her arm and shoulder

• Her left flap shrunk as a side effect of radia-tion, resulting in asymmetry and chronic discomfort

• Due to chemotherapy and hormonal therapyshe was unable to conceive after her treat-ment was completed. This was a major blowto both her and her husband

• The patient had known atherosclerosis andwas advised to have coronary artery bypassgraft surgery (CABG), but vessels used forthe DIEP flap reconstruction impeded thiscardiac surgery procedure

IT’S (SUPPOSED TO BE) AWONDERFUL LIFE A Case Study Demonstrating the Positive Impact ofSurvivorship CareBy Lillie D. Shockney, RN, BS, MAS


VIEWPOINT


• She later develops lymphedema of her leftarm and requires daily treatments for thisand her fatigue

• Her heart disease and inability to properlyrepair it surgically resulted in her developingearly-stage congestive heart failure. Thisresulted in her having shortness of breathwhen climbing steps and chronic fatigue.These medical problems combined with hershoulder pain and lymphedema resulted inher losing her job

• She suffers now from depression• Marriage is strained. Finances are tight dueto copayments for her continued chronictreatments of long-term side effects and herinability to work

• She was diagnosed 4 years later with ovariancancer and is still undergoing treatment

• She tells others “getting breast cancer is theworst thing that has ever happened to me inmy life”

CASE STUDY: SAME PATIENT,SURVIVORSHIP CARE BEGINNING ATTIME OF DIAGNOSISAdditional information obtained about thispatient included:• She has been married for 2 years, and she andher husband have been trying to conceive ababy. Neither have any children, and bothbadly want a child of their own. No previouspregnancies, and this is a first marriage forboth of them

• She works as a waitress at a seafood restau-rant 5 days a week

• History of rotator cuff injury and repair toher left shoulder 2 years ago

• Her mother had breast cancer at age 45 anddied of it at age 48. She thinks her maternalgrandmother might also have had breastcancer, but it wasn’t talked about back then.Her grandmother died at age 59

• Family history of cardiac disease. Father hada heart attack at age 52 and died of a strokeat age 56. She has an elevated cholesteroland has been taking a statin for 1 year

BEFORE TREATMENT BEGAN, THEFOLLOWING STEPS WERE TAKEN:• Referred for genetics consultation and subse-quent testing. Results were positive forBRCA1. The patient decides to do bilateralmastectomies as a result. She doesn’t want todo bilateral oophorectomies yet but wasreferred for a discussion about this with gyn-oncology

• Referred for a rehab medicine consultationto get instructions regarding range-of-motion exercises, lymphedema prevention,and ways to prevent reinjuring her shoulderwhile recovering from her upcoming surgery.The decision was to put in tissue expandersas space holders for now rather than doingimmediate DIEP flap reconstruction sinceshe will need radiation as part of her treat-ment. She will be followed by rehab medi-cine post-op as well

• Referred for a consultation with medicaloncology, and though advised to do chemofirst to shrink the tumor along with her lymphnodes, she opted to undergo surgery first. Theimpact of chemo on her reproductive systemwas discussed at length. Tamoxifen was alsodiscussed, with a plan for her to take hormon-al therapy for 2 years, discontinue for child-bearing, and then resume postpartum

• Referred to fertility preservation consulta-tion to discuss how to preserve her desire tostill have a biological child. Eggs were har-vested since chemo and hormonal therapywould likely cause chemical menopause

• Referred for consultation with plastic sur-gery regarding the value of staged recon-struction. Patient preferred undergoing sur-gery once, but when she learned that flapsshrink in response to radiation therapy, shewas content to have tissue expanders insert-ed as space holders for final flap reconstruc-tion later. In recognition of the cardiac his-tory in her family and her own elevatedcholesterol levels that warrant treatment,the vessels used for reanastomosing her per-forators within the chest area were carefully

“The team taking care of me here showedme that they just weren’t going to treat thedisease; they were going to get to know meas a person and not as someone with stageIIb breast cancer.”



VIEWPOINT

selected, avoiding those that may be need-ed for cardiac surgery in the future

Outcomes:• Patient maintained her range of motion andarm strength post-op

• She did not develop lymphedema by beingmeticulous regarding adhering to the precau-tions given her by the rehab medicine staff

• Fertility preservation was successfully per-formed. After completing 2 years of tamox-ifen therapy, she became pregnant throughin vitro fertilization and gave birth to ahealthy baby boy

• She underwent bilateral salpingo-oophorec-tomies 6 months postpartum to prevent ovar-ian cancer. She was placed on an aromataseinhibitor after this rather than resumingtamoxifen

• She did develop heart disease and underwenta successful CABG procedure 6 years post-treatment

• She has experienced few problems withfatigue and has remained active

• Her reconstruction was done as a staged pro-cedure; after her chemo and radiation, sheunderwent bilateral DIEP flap reconstruction,at which time the temporary tissue expanderswere switched out. The reconstruction lookedgreat, without the radiation affecting its cos-metic appearance. She had no chronic painissues from these procedures

• She continues to work as a waitress at a busyseafood restaurant and now works part-timeafter the birth of her son so that she canspend more time taking care of him

• She also devotes 2 hours a week to being asurvivor volunteer for the breast centerwhere she received her treatment. She pro-vides support to newly diagnosed breast can-cer patients

• When asked about her experience, she tellsnew patients, “I was scared at first when Iheard the diagnosis. How was this going toimpact my life? Can I still have a child?What am I going to look like? But the teamtaking care of me here showed me that theyjust weren’t going to treat the disease; theywere going to get to know me as a person andnot as someone with stage IIb breast cancer.And in doing so, they helped me stay ontrack with my life goals. This is truly a won-derful life!”

The measurable difference in the quality of lifefor this woman when survivorship care is initiat-ed from the onset of the diagnosis is inspiring. Bybeing proactive in the case of this patient, her lifegoals could be maintained, her physical and emo-tional quality of life could be preserved, and per-haps even enriched. My recommendation: Startsurvivorship care simultaneous to confirming thecancer diagnoses of your patients so that they toocan say, “it’s a wonderful life.”g

Go Online to Access All Conference Presentations at

www.AONNonline.org/2011-slides


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Documents

adjuvant treatment of

herceptin use

herceptin therapys

completion of herceptin

adjuvant therapy

adjuvant indicationsherceptin

her2 breast cancer patients

llcnavigating patients