JONS April 2014 by The Oncology Nurse

april 2014 • Vol 5, NO 2

QUALITY, OUTCOMES, AND PERFORMANCE IMPROVEMENT (QOPI) COMMITTEE Pam Goetz, BA

BEST PRACTICES IN NAVIGATION AND CANCER SURVIVORSHIP Best Practices in Patient Navigation and Cancer Survivorship: Moving Toward Quality Patient-Centered Care

REVIEW OF NAVIGATORS ON PATIENT OUTCOMES The Effect of Different Types of Navigators on Patient Outcomes

FOURTH ANNUAL AONN+ CONFERENCE The Role of Complementary Therapies in Navigation Thoracic Cancer Navigation

YE A R A NNI V ERSARY

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Faculty Perspectives

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LETTERS FROM LILLIE

Editor-in-Chief

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

Welcome spring 2014! This issue of the Journal of Oncology Navigation & Survivorship (JONS) is full of information for you to apply within your own work setting, share with fellow navigators and your supervisor, and hopefully will inspire you to personally begin collecting measurement outcomes! We begin with having you “meet” Pam Goetz, BA, one of our Leadership Council members, who is active on the Quality, Outcomes, and Performance Improvement Committee of the Academy of Oncology Nurse & Patient Navigators (AONN+), and who serves as an oncology survivorship coordinator at Sibley Memorial Hospital. She will give you a bird’s-eye view into how she has personally been touched by cancer and what her experiences personally and professionally have been. Next, an article from the George Washington University Cancer Institute team describes best practices in patient navigation and survivorship care focusing on quality patient-centered care being the key to a successful navigation and survivorship program. There are many valuable measurements contained within this article, and I am confident you will find them useful to you in your daily practice. These include specific patient navigation measures! The Commission on Cancer standards for 2015, which are just months away from going into effect, are described, as well as how they are directly tied to navigation and survivorship care. Continuum of Care Services standards are discussed in detail, focusing on navigation, distress measurement requirements, and survivor care planning. Lisa Raedler authors 2 articles for this issue. The first is about complementary medicine, something we know our patients express interest in and want to learn more about and partake in; the second article, on thoracic cancer navigation, includes information directed to lung cancer screening with the hope of having lung cancers diagnosed earlier, which should result in saving more lives. The last article in this issue of JONS is a meta-analysis of 14 research studies associated with the various types of navigators and what the outcome measures have been for each. We are working diligently to finalize the details of our September 2014 AONN+ Conference. It is going to be amazing! You will leave the conference energized and anxious to return home and begin implementing all of the new things you will have learned. With kind regards,

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

Section Editors

Breast Cancer Sharon Gentry, RN, MSN, AOCN, CBCN Breast Health Navigator Novant Health Derrick L. Davis Cancer Center

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

Genetic Counseling

Cristi Radford, MS, CGC Gene Mavens, LLC

Healthcare Disparities Linda Fleisher, PhD, MPH

Asst VP, Office of Health Communications and Health Disparities Asst Prof, Cancer Prevention and Control Fox Chase Cancer Center

Health Promotion and Outreach Iyaad Majed Hasan, DNP, CNP

Director and Nurse Practitioner Survivorship Clinic and Program Cleveland Clinic, Taussig Cancer Center

Patient-Centered Care Mandi Pratt-Chapman, MA Director GW Cancer Institute

Prostate Cancer Frank delaRama, RN, MS, AOCNS

Clinical Nurse Specialist Oncology/Genomics, Cancer Care Clinic Palo Alto Medical Foundation

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

AONN Research Committee Marcy Poletti, RN, MSN

Nursing Operations Supervisor Wake Forest University Baptist Medical Center

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

Penny Widmaier, RN, MSN Oncology Nurse Navigator Botsford Cancer Center

Mission Statement

The Journal of Oncology Navi gation & Survivorship (JONS ) promotes reliance on evidence-based prac tices in navigating patients with cancer and their caregivers through diagnosis, treatment, and survivorship. JONS also seeks to strengthen the role of nurse and patient navigators in cancer care by serving as a platform for these professionals to disseminate original research findings, exchange best practices, and find support for their growing community.

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april 2014 • Volume 5, number 2

Table of ConTents

April 2014 • Vol 5, NO 2

QUALITY, OUTCOMES, AND PERFORMANCE IMPROVEMENT (QOPI) COMMITTEE

Pam Goetz, BA 6

BEST PRACTICES IN NAVIGATION AND CANCER SURVIVORSHIP

Best Practices in Patient Navigation and Cancer Survivorship: 8 Moving Toward Quality Patient-Centered Care

Anne Willis, MA; Mandi Pratt-Chapman, MA; Elisabeth Reed, MPA; Elizabeth Hatcher, RN, BSN REVIEW OF NAVIGATORS ON PATIENT OUTCOMES

The Effect of Different Types of Navigators on Patient Outcomes

Sheri McVay, BSN, RN; Tabitha Toney, BSN, RN;

Donald Kautz, RN, PhD, CRRN, CNE, ACNS-BC

FOURTH ANNUAL AONN+ CONFERENCE

The Role of Complementary Therapies in Navigation 27

Lisa A. Raedler, PhD, RPh 32 Thoracic Cancer Navigation Lisa A. Raedler, PhD, RPh

Journal of Oncology Navigation & Survivorship, ISSN 2166-0999 (print); ISSN 2166-0980 (online), is published 6 times a year by Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. Telephone: 732.656.7935. Fax: 732.656.7938. Copyright © 2014 by Green Hill Healthcare Communications, LLC. All rights reserved. Journal of Oncology Navigation & Survivorship logo is a registered trademark of Green Hill Healthcare Communications, LLC. No part of this publication may be reproduced or transmitted in any form or by any means now or hereafter known, electronic or mechanical, including photocopy, recording, or any informational storage and retrieval system, without written permission from the publisher. Printed in the United States of America. EDITORIAL CORRESPONDENCE should be addressed to EDITORIAL DEPARTMENT, Journal of Oncology Navigation & Survivorship (JONS), 1249 South River Road, Suite 202A, Cranbury, NJ 08512. E-mail: jbrandt@the-lynx-group.com. YEARLY SUBSCRIPTION RATES: United States and possessions: individuals, $50.00; institutions, $90.00; single issues, $5.00. Orders will be billed at individual rate until proof of status is confirmed. Prices are subject to change without notice. Correspondence regarding permission to reprint all or part of any article published in this journal should be addressed to REPRINT PERMISSIONS DEPARTMENT, Green Hill Healthcare Communications, LLC, 1249 South River Road, Suite 202A, Cranbury, NJ 08512. The ideas and opinions expressed in JONS do not necessarily reflect those of the editorial board, the editorial director, or the publisher. Publication of an advertisement or other product mentioned in JONS should not be construed as an endorsement of the product or the manufacturer’s claims. Readers are encouraged to contact the manufacturer with questions about the features or limitations of the products mentioned. Neither the editorial board nor the publisher assumes any responsibility for any injury and/or damage to persons or property arising out of or related to any use of the material contained in this periodical. The reader is advised to check the appropriate medical literature and the product information currently provided by the manufacturer of each drug to be administered to verify the dosage, the method and duration of administration, or contraindications. It is the responsibility of the treating physician or other healthcare professional, relying on independent experience and knowledge of the patient, to determine drug dosages and the best treatment for the patient. Every effort has been made to check generic and trade names, and to verify dosages. The ultimate responsibility, however, lies with the prescribing physician. Please convey any errors to the editorial director.

ABOUT THE COVER

Cubistic Apple Trees Acrylic by a Person Diagnosed with Cancer Artwork from the Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition www.LillyOncologyOnCanvas.com I am a landscape painter. When my body was broken, my images became fragmented. Since my concern as a painter has always been about creating space through color relationships, I broke the trees up and let the mountains come through the branches, so the viewer could see through the trees and not get stuck in the rigid way I drew them. This is how I felt when I endured pain: rigid, as though my body was made of china about to shatter. The first three surgeries (of seven), I asked, “Why me?” but by the fourth I said, “OK, I’m listening.” That is where the preciousness of life came so fully into my heart. I expressed my gratitude through painting. Painting was never a healing therapy for me, as I am, by nature, “a painter.” It is what I do, who I am.

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Quality, Outcomes, and Performance Improvement (QOPI) Committee

Pam Goetz, BA

Oncology Survivorship Coordinator Sibley Memorial Hospital, Johns Hopkins Medicine Academy of Oncology Nurse & Patient Navigators (AONN+) Leadership Council

y introduction to the world of cancer came when I was in college, via a phone call from my mother who was 3000 miles away. For weeks she had delayed calling my siblings and me to tell each of us that she had ovarian cancer, until she was having a good day when the chemotherapy was not wreaking havoc. Not wanting to worry us, she made a joke about the quickest way to lose weight was to have a hysterectomy. Then 20 years later, she told us she had early-stage breast cancer. I had matured enough and learned enough to insist that I visit to see how I could support her and my dad as they managed this second cancer. Remarkably, 10 years later at 84, my mom is still leading an engaged, vital life. And I am working in cancer advocacy as a lay navigator. It is not that my mother’s illnesses alone drove me to pursue this work in the way you might think. The other contributing factor is that my degree is in studio art. For a number of (youthful and valid) reasons, I pursued this degree, ignoring an interest in social work and without giving much thought to how I would support myself after college. The good news is that I have had the gumption to evolve professionally on a somewhat circuitous path to work where I can make a difference in other people’s lives, even if I am not a social worker.

Medical Sciences Gives Options, Not Solutions

A background in marketing, education, and nonprofit office management, with attendant administrative, technical, and teaching skills, eventually led me to an education and outreach position at a community hospital cancer program. At the time, the hospital conducted open community screenings for prostate cancer, which in 2006 were seen as a public service of raising awareness. However, the screening guidelines about who should be screened were actively debated. To better manage the screening events, I began to read about prostate cancer, risk factors, screening, and treatment. The more I read, the more I thought that given the debate about screening, we needed to provide the men with education about the path they would be on, if their screening yielded an abnormal finding. The screenings also raised questions about what guidelines the certified urologists would follow, since those were in flux. My contribution then included ensuring that the clinical guidelines and process used followed the current recom-

april 2014 • Volume 5, number 2

mendations, as well as improving how we educated the participating men. The prostate cancer screening experience impacted my awareness about my own personal health risks and screening. After my mother had completed treatment for breast cancer and asked me if I wanted her to do BRCA testing, I needed time to thoughtfully answer. What would I do if she were BRCA positive? Although I was pretty sure I was done with having children—I had 2 young beauties at the time—did I want certain knowledge that would require a decision about having a prophylactic oophorectomy or double mastectomy? And what about my sisters; would they want to know the results? We might be obligated to tell them, which would force them to make similar decisions about their own preventive actions. Ultimately, I decided that the more information I had, the better. And as it turned out, my mom was BRCA negative, with the panel available at the time. I learned about the complexities of patient decision-making regarding testing, screening, and reducing risk.

As a patient advocate, I have come to understand that quality healthcare must exist in an environment where patient preferences are center stage. This was my first influential experience that made clear to me that medical science offers options, but not necessarily solutions. Just as the science is leading us to understand that an individual’s biology is key to effective treatment, identifying the right treatment for an individual entails knowing who they are and what is important to them. As a patient advocate, I have come to understand that quality healthcare must exist in an environment where patient preferences are center stage. Pertinent to patient preferences is that the patient understands the full meaning of the options provided to them—whether it is a free screening, oral versus infused chemotherapy, a clinical trial, mastectomy or lumpectomy, surgery versus watchful waiting, and so on. How do we know if a patient gives full consent? How do we test their comprehension about the full meaning of the decisions we stand by them to make?

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Taking Charge

Perhaps it is because I recognize that I learn best on the job that I said “yes!” when offered the chance to lead the hospital in implementing a “no-smoking” policy on the campus. The policy was going to be implemented at all the county hospitals, so leading the initiative meant collaborating with staff from the other hospitals, as well as working with multiple departments in my own hospital in determining how we would manage the human resources, patient/visitor, and marketing aspects of the new policy. This was a remarkable opportunity for me to be part of a hospital-wide initiative that made complete “health” sense, exposed me to many diverse departments in the institution, and required buy-in and cooperation for many staff. What I have learned is that while there have been times that not having a clinical specialty could have been a limitation for me, oftentimes being something of a generalist has enabled me to participate in some impactful projects. And it pays to say “yes!” As director of survivorship programs at a national cancer advocacy hospital institution program, I had the opportunity to expand my skills and knowledge about project management, patient resource development and evaluation, healthcare professional education, and health policy. I oversaw a Centers for Disease Control and Prevention grant for the development of hematologic patient resources, worked with content experts in developing patient self-advocacy print materials, and was on a team that developed an iPhone app to facilitate effective discussions between patients and providers. I represented the organization on the team that created Journey Forward, a tool for creating survivorship care plans. I worked with cancer survivors on staff, grassroots advocates, lobbyists, policy staff, nurses, social workers, the American Society of Clinical Oncology, the National Association of Social Workers, the Oncology Nursing Society, health insurers, and pharmaceutical companies. Through these relationships, I was fortunate to learn from health policy thought leaders; dedicated, frontline oncology providers; and survivors about many of the challenges associated with the complexity of cancer care, problems inherent in our healthcare system, and the importance of hearing the patient voice in defining and delivering quality cancer care. My current role at Sibley Memorial Hospital, Johns Hopkins Medicine, is both as a survivorship program developer and survivorship navigator. Each of these roles could be a full-time endeavor, but I appreciate having the diversity in my work. One role allows me to think strategically and the other keeps me in touch with the reality of one individual at a time. The navigation I do is structured

in part by the process we have developed for patients transitioning from active treatment. Our nurse practitioner conducts a wellness transition visit, where she delivers a survivorship care plan, discusses current side effects, and lays out a written plan moving forward. I follow up with the patients to assess how things are going and direct them to resources within the hospital or in the community. Training in integrative navigation has helped shape the goals and approach I take in this work. Many patients seek ways to reduce their risk of recurrence and are motivated to make lifestyle changes, and offering programs and navigation to integrative resources is in demand.

Patients expect that their providers will give them the best evidence-based care, and that includes treatment options, decision-making tools, educational materials that are tested, culturally and literacy appropriate, with full disclosure about cost, side effects, and impact on quality of life. My interest in quality improvement and research lies in recognizing that there are profound effects of treatment for the individual, and we are obligated to help each patient make choices that are the best for them. Patients expect that their providers will give them the best evidence-based care, and that includes treatment options, decision-making tools, educational materials that are tested, cultural and literacy appropriate, with full disclosure about cost, side effects, and impact on quality of life. Whatever the intervention, it requires some form of research or testing. Of course treatment decisions impact survivorship, yet another area where more research is needed. As a lay navigator and program planner working in a hospital setting, I can initiate and implement quality improvement projects. My interest on the AONN+ QOPI Committee is to collaborate with other people in the pursuit of quality improvement. While I am not a formal research or clinical professional, I have been involved in various research projects with educational interventions (with Kaiser Permanente), various focus groups, and numerous programmatic evaluations. As navigators, we have natural opportunities to evaluate what we do and make the care we provide to patients even better. And I see the AONN+ community as my extended partners in quality improvement. g

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Best Practices in Navigation and Cancer Survivorship

Best Practices in Patient Navigation and Cancer Survivorship: Moving Toward Quality Patient-Centered Care Anne Willis, MA; Mandi Pratt-Chapman, MA; Elisabeth Reed, MPA; Elizabeth Hatcher, RN, BSN George Washington University Cancer Institute, Washington, DC Background: The number of patient navigation and clinical survivorship programs is rapidly increasing. As more institutions develop these programs, healthcare professionals need guidance on best practices and how other institutions run their patient navigation and survivorship programs. Methods: We conducted a national web-based survey of healthcare professionals at institutions with patient navigation and/or clinical survivorship programs. Respondents were asked to identify patient navigation caseload, measures tracked, tracking tools, clinical tools, funding, challenges, and recommendations for financial sustainability. Results: The survey was sent to 1500 healthcare professionals; 100 completed the survey. Respondents with patient navigation and/or survivorship programs reported practice variation across several variables (eg, measures tracked) and identified common practices across institutions (eg, funding sources). Funding was identified as a challenge across both programs. Recommendations for sustainability included reimbursement, grants, and demonstrating value. Conclusions: Patient-centered initiatives like patient navigation and clinical survivorship programs are relatively new. Program leaders and administrators need to understand caseload per full-time equivalent as well as potential ways to measure success in order to plan and implement these programs. Understanding existing practices for patient navigation and survivorship programs can assist healthcare professionals create and improve the delivery of these programs at their institutions.

ew cancer program accreditation standards have the potential to rapidly change cancer care delivery. The American College of Surgeons Commission on Cancer (CoC), which accredits more than 1500 institutions that provide care for the majority of newly diagnosed cancer patients,1 announced new Continuum of Care Services standards that will go into effect in January 2015.2 These standards focus on patient navigation, psychosocial distress screening, and survivorship care plans (SCPs). See Table 1 for a list of the new standards. Creating patient navigation and survivorship programs to deliver SCPs can be challenging. Many clinical professionals are tasked with developing programs, but they may not possess the program-planning skills that are essential for success. Both patient navigation and survivorship are relatively new fields that lack standards and guidance for program implementation. In addition, institutions have different resources at their disposal and have different patient populations. There is no “one-size-fits-all” approach. Tremendous variation in care exists and healthcare professionals often must take a “see-what-sticks” approach to creating these programs. The new CoC standards have led to tremendous growth in the number of patient navigation and survivorship programs. To provide clarity and determine best practices for implementing patient navigation and cancer survivorship programs, researchers at the George Wash-

april 2014 • Volume 5, number 2

ington University (GW) Cancer Institute’s Center for the Advancement of Cancer Survivorship, Navigation, and Policy (caSNP) conducted the Best Practices in Patient Navigation and Cancer Survivorship Survey. The brief survey sought to collect and identify practices pertaining to measures tracked, clinical tools, funding, challenges, and other key topics.

Methods

The survey was developed as a brief tool to collect information related to frequently asked questions from healthcare professionals through the GW Cancer Institute’s Executive Training on Navigation and Survivorship, the caSNP and Association of Community Cancer Centers’ listservs, LinkedIn groups, and in-person conversations between GW Cancer Institute staff and other professionals. Survey topics and questions were based on a consensus of 4 staff members who are actively engaged in healthcare provider education on these topics. The survey included 2 initial questions to assess respondent type and program type at the respondent’s institution. Respondents whose institution had a navigation program were asked to complete 7 navigation-specific questions, and those with a survivorship program were asked to answer 8 survivorship-specific questions. Respondents from institutions with both programs were asked to complete a total of 15 questions about their institutions’

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Best Practices in Navigation and cancer Survivorship

Table 1 Commission on Cancer Continuum of Care Services Standards Standard Number

Standard Requirement

3.1

Patient Navigation Process: A patient navigation process, driven by a community needs assessment, is established to address healthcare disparities and barriers to care for patients. Resources to address identified barriers may be provided either on-site or by referral to community-based or national organizations. The navigation process is evaluated, documented, and reported to the cancer committee annually. The patient navigation process is modified or enhanced each year to address additional barriers identified by the community needs assessment.

3.2

Psychosocial Distress Screening: The cancer committee develops and implements a process to integrate and monitor on-site psychosocial distress screening and referral for the provision of psychosocial care.

3.3

Survivorship Care Plan: The cancer committee develops and implements a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. The process is monitored, evaluated, and presented at least annually to the cancer committee and documented in minutes.

Source: Reference 2.

navigation and survivorship programs. The final question was an open-ended request to identify other topics of interest. The survey and recruitment tools were submitted to the GW Office of Human Research, and exempt from Institutional Review Board human subjects research review. The survey was open from January 30, 2013 to February 27, 2013 (4 weeks). A link was sent out through the caSNP listserv, which included more than 1500 professionals. Listserv members were asked to send the survey to others who might be interested. No incentive was offered to complete the survey, but participants were told that results would be summarized and presented on a free webinar. In total, 146 respondents started the survey and 100 completed it. An analysis was performed using frequencies of responses for categorical data. Not all respondents answered every question; therefore, the total number of respondents and corresponding percentages vary.

Results

Respondents Respondents were asked to identify their job type; more than 1 job type could be selected if applicable. Of 99 respondents, 33% self-identified as patient navigators, 30% as nurses, and 5% as nurse practitioners. Other respondents identified themselves as program managers (22%), other (16%), social workers (12%), administrators (10%), and primary care providers (1%). Respondents who selected “other” identified themselves as oncology nurse navigators (2%), health educators (2%), psychologists (2%), nurse researchers (1%), or oncology navigation coordinators (1%). One respondent skipped this question. Respondents were also asked whether their institution had a navigation program only, a survivorship program only, or both programs. Of 97 respondents, 41% reported that their institution had both programs, 40% had a navigation program only, and 19% had a survivorship program only. Three respondents skipped this question.

Table 2 Annual Patient Navigation Caseload Phase of the Cancer Continuum Patients, n

Screening

Diagnosis

Treatment Posttreatment

<100

27%

30%

46%

37%

101-150

13%

32%

18%

29%

151-200

201-250

251-300

14%

12%

10%

301-350

351-400

>400

29%

10%

Totala

The total number of respondents does not include respondents who selected “not sure” or “not applicable.”

Patient Navigation–Specific Responses Seventy-two respondents described their annual average patient load for full-time navigators across the cancer continuum, starting with less than 100 patients and to more than 400 patients in increments of 50 patients (Table 2). Screening, diagnosis, treatment, and posttreatment phases were included. Respondents could also select “not sure” or “not applicable” (“n/a”) for each phase of the cancer continuum. Respondents were asked to indicate which of the 13 measures provided were tracked in their patient navigation program and how each measure was tracked: tracking log, medical records, validated scale/tool/questionnaire, my own scale/tool/questionnaire, other. Respondents could indicate additional measures through selecting the “other” answer choice. The measures and tracking mechanisms of the 72 survey participants who answered the question are indicated in Table 3. Respondents (n = 72) also identified which tracking tools they used. Seven answer choices were provided: Excel spread-

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Best Practices in Navigation and cancer Survivorship

Table 3 Patient Navigation Measure Tracking and Tracking Mechanisms Tracking Mechanism, % Measure

Total Tracking, n (%) Tracking Log

Medical Records

Validated Scale/ Homegrown Scale/ Tool/Questionnaire Tool/Questionnaire

Other

Patient satisfaction

38/69 (57)

Time to screening

36/72 (50)

Time to diagnosis

41/70 (60)

Time to treatment

47/70 (68)

Barriers to care/actions to remove barriers

54/72 (75)

Adherence to scheduled visits/missed appointments

44/69 (65)

Adherence to treatment

36/69 (54)

Care coordination

54/69 (79)

Communication between patient and provider

47/69 (69)

Healthcare utilization

30/68 (47)

Psychosocial distress

47/70 (68)

Quality of life

25/69 (39)

Healthy behaviors

24/64 (44)

Bold numbers represent the 2 highest percentages from each answer.

sheet (51%), paper logs (47%), Electronic Medical Record (EMR; 30%), Access database (21%), other (20%), navigation software (13%), or none (3%). “Other” responses were: in-house software (1%), web-based database (1%), ARIA (1%), Epiphany database and appointment reminder (1%), PenRad and Outlook Calendar (1%), Extended Prostate Cancer Index Composite (EPIC) (1%), Siebel (1%), Efforts to Outcomes software (1%), Midas+ Care Management Module (1%), Word document forms (1%), research tools (1%), Microsoft SharePoint (1%), custom Access database (1%), and MSM (1%). MSM is assumed to be a customized tracking method through Management Systems Modelling Software. Seventy-three respondents rated 8 common challenges using a 5-point Likert scale with 1 being most challenging and 5 being least challenging. For each challenge area respondents could select “n/a” (Table 4). Respondents (n = 74) were asked to identify sources of funding for their patient navigation program from a list of 5 options: internal funds allocated for program (ie, new budget line item) (58%), grant support (57%), existing resources (eg, staff, space) (18%), other (12%), and direct reimbursement (1%). “Other” responses were: donations (individuals, community, and foundations) (4%), grants (1%), not funded by grants (1%), operational budget (1%), hospital auxiliary (1%), unknown (1%), and n/a (1%). Funding often

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comes from multiple sources for navigation programs, so more than 1 source could be chosen resulting in total percentages aggregating to over 100%. Respondents were asked whether they formally track return on investment, cost-benefit, cost versus revenue, or cost-effectiveness. Of 69 respondents, 59% indicated that they were not tracking any of these measures. Some respondents reported tracking number of patients (38%), patient satisfaction (23%), timeliness of care (22%), barriers/resolutions (20%), direct program costs (eg, personnel, materials, training, procedures) (19%), number of procedures, tests, consultations, etc (17%), referrals from other patients and navigators (16%), clinical trial accrual (15%), adherence to treatment (10%), outmigration avoided (9%), downstream revenue (9%), no-shows avoided (7%), quality of life (7%), survival (7%), other (6%), and payments that otherwise might not have been made (0%). “Other” responses were: survivorship (1%), unknown (1%), services provided (1%), and cost avoidance (decreased emergency department visits and decreased inpatient stays) (1%). Thirty survey participants responded to an open-ended question identifying suggestions for financial sustainability of patient navigation. Responses were: reimbursement (27%), demonstrate value (patients staying local for treatment, prevention of 30-day readmissions, finding payment

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Best Practices in Navigation and cancer Survivorship

assistance, cost savings, retaining patients, downstream revenue, increase research accrual, cost avoidance, migration data/prevention of outmigration, guidelines adherence, value to primary care provider [PCP] and PCP satisfaction, clinical trial accrual) (24%), grants/donations/ philanthropy (14%), champions/physician buy-in (8%), state/federal funding (5%), research (5%), show program success (3%), partnership with state, hospitals, federally qualified health centers (3%), add cost into operating budget (3%), bill for nursing education for oncology nurse navigators (3%), market services (3%), external funding for navigation of particular patient populations (3%), develop pathways for patient services (3%), develop criteria for who should be navigated (3%), create a common definition and job description (3%), and certification for patient navigators (3%). Survivorship-Specific Responses Fifty-one survey participants identified the survivorship care plan template(s) used in their survivorship program. They could select from 9 answer choices: homegrown tool (47%), LIVESTRONG Care Plan (24%), none—we have a survivorship program but do not provide an SCP (24%), Journey Forward Care Plan Builder (22%), American Society of Clinical Oncology templates (12%), commercial survivorship care plan (9%), report generated from EMR (8%), other (6%), or discharge letter from oncologist (2%). “Other” responses provided were unknown (6%). Respondents were asked to identify which constructs are tracked in their programs. Responses from the 54 respondents who answered the question are summarized in Table 5. “Other” responses provided were unknown (4%), pain (2%), guideline delivery (2%), PCP satisfaction and understanding (2%), referrals made (2%), and resources utilized (2%). Respondents (n = 52) were asked which assessment tools are used in their survivorship program and could select from 14 answer choices: National Comprehensive Cancer Network Distress Thermometer (50%), patient satisfaction survey (33%), tool developed by the institution (27%), other (15%), none (12%), fatigue scale (10%), Patient Health Questionnaire (PHQ-9) (10%), Functional Assessment of Cancer Therapy-General (FACT-G) (9%), Functional Assessment of Chronic Illness Therapy (FACIT) (4%), McGill Pain Questionnaire (4%), QualityMetric’s SF-36 or SF-12 (4%), body image scale (2%), Communication and Attitudinal Self-Efficacy-Cancer (CASE-C) (2%), and Impact of Cancer Scale Tool (0%). “Other” responses provided were: intake tool (10%), unknown (4%), EPIC (2%), CancerSupportSource (2%), Work Productivity and Activity Impairment Questionnaire: General Health (WPAI:GH) (2%), Valuation of Lost Productivity (VOLP) (2%), European

eighted Average for Challenge Areas for Patient Table 4 W Navigation Programs Challenge

Weighted Average (scale of 1 to 5) Respondents,a n

Lack of funding

2.70

Lack of staff/provider clarity on patient navigation roles

2.73

Lack of reimbursement for navigation services

2.93

Lack of staff support

3.63

Lack of physician support

3.65

Lack of administration support

3.89

Inability to find a qualified navigator

4.26

Patients are not interested

4.53

Number of respondents does not include respondents who selected “not applicable.”

Table 5 Survivorship Measures Tracked Measure

Response, %

Psychosocial distress

Patient satisfaction

Quality of life

Physical activity

Health behaviors

Functional status

Care coordination

Healthcare utilization

Adherence

Self-efficacy/patient activation

Other

Cost-effectiveness

None

Cost-benefit

Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 30 (QLQC30) (2%), EORTC QLQ-C29 (2%), RAND SF-36 (2%), Piper Fatigue Scale (2%), Edmonton Symptom Assessment Scale (2%), Canadian Problem Checklist (2%), FACIT Fatigue Scale (2%), and nutritional surveys (2%). Fifty-two respondents identified sources of funding for their survivorship program from a list of 5 options: grant support (60%), internal funds allocated for program (ie, new budget line item) (58%), existing resources (eg, staff, space) (42%), direct reimbursement (19%), and other (17%).

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eighted Average for Challenge Areas for Survivorship Table 6 W Programs Challenge

Weighted Average Respondents,a (scale of 1 to 5) n

Lack of funding to cover program costs

2.33

Staff time: completion of survivorship care plan too long

2.36

Reimbursement

2.61

Staff time: current staff are too busy

2.73

Lack of physician buy-in/support

3.08

Need additional program development/implementation assistance

3.08

Oncologist(s) are unwilling to transition care

3.25

Survivors unwilling to transition care

3.35

Lack of guidelines for follow-up care

3.36

Survivorship is not an institutional/departmental priority

3.38

Physicians want more evidence before changing practice

3.51

Lack of knowledge about caring for survivors

3.60

Lack of administration buy-in/support

3.62

Lack of staff buy-in/support

3.64

Distrust between oncologist and primary care providers

3.74

Number of respondents does not include respondents who selected “not applicable.”

“Other” responses were: donations (individuals, community and private) (10%), fundraising (4%), philanthropy (2%), any source available (2%), and unknown (2%). Respondents (n = 47) were asked to rate 8 common challenges using a 5-point Likert scale with 1 being most challenging and 5 being least challenging. For each challenge area, respondents could select “n/a.” For respondents for whom the challenge was applicable, the weighted average for each challenge is shown in Table 6. Respondents (n = 43) were asked to identify reimbursement challenges from a list of 19 answer choices: creation of survivorship care plan (33%), none (28%), nutrition services (26%), delivery of survivorship care plan to patient (26%), care coordination with PCP and other providers (26%), weight management services (23%), psychosocial care (23%), health promotion (21%), psychosocial assess-

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ment (19%), patient navigation (19%), physical activity services (16%), not all clinician services are covered (16%), late effects education (14%), other (14%), rehabilitation (12%), symptom management and palliative care (9%), screening/surveillance (9%), specialty referrals (5%), and medical assessment (0%). “Other” responses provided were: unsure (7%), do not bill (7%), care for surgical patients is not reimbursed within 3 months of surgery (2%), and cannot bill at the appropriate level (2%). Twenty-five survey participants responded to an open- ended question identifying how the survivorship program at their institution bills for services. Responses provided were: level 3-5 visit (24%), “n/a” (24%), do not know (20%), do not bill (16%), nurse practitioner (NP) visit (4%), NP/ PCP visit (4%). They were also asked an open-ended question to identify suggestions for financial sustainability of survivorship programs. Among the 24 respondents, 38% include reimbursement, 21% grants, 17% “do not know,” 8% survivorship care plan efficiencies, 8% understand the benefits of survivorship programs, 4% rehabilitation, 4% streamlined services, and 4% organizational budget. Additional Topics Respondents (n = 32) were asked a final open-ended question to identify additional topics of interest. Table 7 summarizes these responses.

Discussion

Our study reports findings from healthcare professionals whose institutions have already established navigation and survivorship programs. Average patient navigation caseload can vary across several factors, including phase of the cancer continuum and patient population. Many navigators reported either high (>400 patients) or low volume (<150 patients) for screening, and more than half reported navigating fewer than 150 patients during the diagnosis, treatment, and posttreatment phases. The field of patient navigation measures is still evolving and several efforts have been aimed at establishing common measures.3,4 Many of the measures cited most often by respondents were consistent with the goals of patient navigation: removing barriers to care and coordinating care.5 More than half of the respondents tracked care coordination, barriers to care/actions to remove barriers, communication between patient and provider, time to treatment, psychosocial distress, adherence to scheduled visits/missed appointments, time to diagnosis, adherence to treatment, patient satisfaction, and time to screening. Despite a core goal of removing barriers to care, 25% of respondents indicated that they did not track this measure. Navigators reported heavy reliance on low-tech tracking options, with

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Best Practices in Navigation and cancer Survivorship

about half using an Excel spreadsheet and/or paper as a tracking log. Use of these low-tech options may be related to funding, time, and role-clarity challenges. The greatest challenge areas identified were related to funding and roles. Programs were reportedly largely funded from a combination of internal funds and/or grants. While grants have been instrumental in helping organizations launch navigation programs, the funding source is not sustainable. Interestingly, nearly one-quarter of the respondents identified demonstrating value as a strategy to financially sustain navigation programs, yet nearly 60% of respondents were not tracking value at all. Lack of role clarity was also cited as a challenge. This finding illustrates a larger need in the field of patient navigation to better define the roles of patient navigators and how they are distinct from and coordinate with other healthcare professionals. Fewer respondents reported having a survivorship program. Almost half of the respondents reported using a homegrown survivorship care plan tool. In its landmark From Cancer Patient to Cancer Survivor: Lost in Transition report,6 the Institute of Medicine recommended information fields for SCPs, yet studies have shown that many SCPs do not meet these recommendations.7,8 With such high use of homegrown templates, more research is needed on how those templates were developed, what content they contain, and whether they are effective. As with navigation, efforts are under way in the field of survivorship to establish common measures, including the National Cancer Institute’s Grid-Enabled Measures-Care Planning Initiative through its Grid-Enabled Measures Database. The initiative seeks to build consensus on survivorship care-planning measures by allowing users to submit and rate constructs and measures. In our study, psychosocial distress and patient satisfaction were reportedly tracked by more than half of the respondents, and almost half reported tracking quality of life and physical activity. Despite some common constructs, variation was reported in the tools used to measure the constructs, which creates difficulties in conducting and comparing research on patient and program outcomes. Funding was also reported as a major challenge, with most respondents again reporting a mix of internal funds and/or grants as primary funding sources. Fewer than 20% of the respondents reported using reimbursement as a funding source, and challenges getting some services reimbursed were cited. It is important to note, however, that more than one-quarter of the respondents indicated no problems with reimbursement, and some of the reportedly problematic services do have reimbursement options, such as delivery of the survivorship care plan and nutrition consultation. This finding suggests a continued need to share best practices and successes.

Table 7 Additional Topics of Interest Respondent Program Type Navigation

Topics • Program development • Networking • Attaining administrative support survivorship

programs

• Outcomes measures and tracking • Navigation tracking software/tools navigation

processes

• National and state navigation reimbursement

efforts

• Sustainability

Survivorship

• • • • •

Models of care Disease-specific practice and guidelines Attaining buy-in Psychosocial distress processes Who completes and delivers the SCP

Both

• • • • • •

Regional networks/collaborations IT solutions Care maps Transition from SCP to survivorship clinic Assessment tools Funding navigation processes

IT indicates information technology; SCP, survivorship care plan.

Limitations This study has several limitations. Because it was meant to quickly collect best practices from a variety of respondents, the results are not representative of all healthcare professionals at institutions with navigation and survivorship programs, and the sample size is relatively small. As the goal was breadth rather than depth, limited information about the respondents is available. Moreover, any type of respondent from an institution with a navigation and/or survivorship program was eligible to complete the survey, so some of the respondents were unable to answer some of the questions. Despite these limitations, this is one of a few national studies seeking to identify best practices in navigation and/or survivorship and will be helpful for healthcare providers seeking to create or improve their programs.

Conclusions

Patient-centered initiatives like patient navigation and clinical survivorship programs are relatively new; however, the number of programs has grown significantly in the past 5 to 10 years spurred on by patient demands and new accreditation requirements. Our results provide critical insight into implementation practices related to navigation and survivorship programs from institutions across the country. The findings can assist healthcare professionals who are creating or improving programs for which little guidance is available. Based on survey findings, patient navigators who

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Best Practices in Navigation and cancer Survivorship

assist patients during the screening part of the cancer continuum may be able to navigate a significantly greater number of patients annually than navigators assisting patients after diagnosis; and navigators supporting patients in treatment may need a smaller caseload than navigators supporting patients, at other points along the continuum. In addition, the survey yields data to help programs improve by aligning what is evaluated with the core function of the navigator (removal of barriers to healthcare). The results also indicate the need to identify financially sustainable models for patient navigation and clinical survivorship programs and consensus on core measures. While respondents identified demonstrating value as a key strategy for sustainability, most programs were not tracking value. Focusing evaluation on the value of patient-centered programs is critical since most programs are funded internally or by grants. Healthcare leaders who champion patient-centered programs will benefit from ongoing research, specific methods, and consensus measures to evaluate program impact. g

Author Disclosure Statement: All authors have nothing to disclose. Corresponding Author: Anne Willis, MA, George Washington University Cancer Institute, 2030 M Street, NW, Suite 4003, Washington, DC 20036; E-mail: annewillis@gwu.edu.

References

1. About accreditation. American College of Surgeons. Commission on Cancer. www.facs.org/cancer/coc/whatis.html. Accessed August 16, 2013. 2. Cancer program standards 2012: ensuring patient-centered care. American College of Surgeons. Commission on Cancer. www.facs.org/cancer/coc/program standards2012.html. Accessed August 16, 2013. 3. National Patient Navigation Leadership Summit (NPNLS): measuring the impact and potential of patient navigation. Cancer. 2011;117(suppl 15):3535-3623. 4. Crane-Okada R. Evaluation and outcome measures in patient navigation. Semin Oncol Nurs. 2013;29(2):128-140. 5. Freeman HP, Rodriguez RL. History and principles of patient navigation. Cancer. 2011;117(suppl 15):3539-3542. 6. Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academies Press; 2006. 7. Stricker CT, Jacobs LA, Risendal B, et al. Survivorship care planning after the Institute of Medicine recommendations: how are we faring? J Cancer Surviv. 2011;5(4):358-370. 8. Salz T, Oeffinger KC, McCabe MS, Layne TM, Bach PB. Survivorship care plans in research and practice. CA Cancer J Clin. 2012;62(2):101-117.

Call for Papers The Journal of Oncology Navigation & Survivorship® (JONS), launched in 2010, is the nation’s first peer-reviewed clinical journal for Oncology Nurse and Patient Navigators. As this critical area of specialty and expertise grows, research and sharing of best practices are integral to both improving the clinical care of cancer patients as well as expanding the existing literature and knowledge base. Our goal at JONS is to help facilitate that growth.

Papers can be in the following forms: • Original Research • Case Study • Review Article (a synopsis/review of current • “How To” article designed to transfer literature in a specific area of research) successes to fellow practitioners Each manuscript is subject to an internal review to see that it fits the scope and mission of our journal. Papers that pass the initial review could be subject to a blind peer review; final acceptance is based on that review. If you are interested in submitting a paper or have any questions, please feel free to visit our website www.JONS-online.com or e-mail our editorial department at jbrandt@the-lynx-group.com.

april 2014 • Volume 5, number 2

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SCIENTIFIC CONFERENCES 2014-2015:

Pancreatic Cancer: Innovations in Research and Treatment Co-Chairpersons: Dafna Bar-Sagi, David A. Tuveson, Christine Iacobuzio-Donahue, Alec Kimmelman, and Andrew M. Lowy May 18-21, 2014 New Orleans, LA AACR Precision Medicine Series Drug Sensitivity and Resistance: Improving Cancer Therapy Co-Chairpersons: Gideon Bollag, Elaine Mardis, Gordon Mills, and David Solit June 18-21, 2014 Orlando, FL Marsha Rivkin Center for Ovarian Cancer Research-AACR 10th Biennial Ovarian Cancer Research Symposium Co-Chairpersons: Kathleen Cho, Sandra Orsulic, Mary L. “Nora” Disis, and Saul E. Rivkin September 8-9, 2014 Seattle, WA Targeting PI3K/mTOR Networks in Cancer Co-Chairpersons: Lewis C. Cantley, Jose Baselga, Joan S. Brugge, Brendan D. Manning, and Malte Peters September 14-17, 2014 Philadelphia, PA Hematological Malignancies: Translating Discoveries to Novel Therapies Co-Chairpersons: Kenneth C. Anderson, Scott Armstrong, Riccardo Dalla-Favera, and Margaret Shipp September 20-23, 2014 Philadelphia, PA Advances in Melanoma: From Biology to Therapy Co-Chairpersons: Suzanne L. Topalian, Keith T. Flaherty, and Levi A. Garraway, September 20–23, 2014 Philadelphia, PA

13th Annual International Conference on Frontiers in Cancer Prevention Research Program Committee Chairperson: Phillip A. Dennis September 28-October 1, 2014 New Orleans, LA EORTC-NCI-AACR International Symposium on Molecular Targets and Cancer Therapeutics Scientific Committee Co-Chairpersons: Jean-Charles Soria, Lee J. Helman, and Jeffrey A. Engelman November 18-21, 2014 Barcelona, Spain Tumor Immunology Co-Chairpersons: Robert H. Vonderheide, Nina Bhardwaj, Stanley Riddell, and Cynthia L. Sears December 1-4, 2014 Orlando, FL San Antonio Breast Cancer Symposium December 9-13, 2014 San Antonio, TX AACR Annual Meeting 2015 Program Committee Chairperson: Lewis C. Cantley April 18-22, 2015 Philadelphia, PA Advances in Brain Cancer Research Co-Chairpersons: Eric C. Holland, Franziska Michor, Martine F. Roussel, and Michael D. Taylor May 27-30, 2015 • Washington, DC Metabolism and Cancer Co-Chairpersons: Ralph J. DeBerardinis, David M. Sabatini, and Almut Schultze June 7-10, 2015 Bellevue, WA

Review of Navigators on Patient outcomes

The Effect of Different Types of Navigators on Patient Outcomes Sheri McVay, BSN, RN1; Tabitha Toney, BSN, RN2; Donald Kautz, RN, PhD, CRRN, CNE, ACNS-BC3 1 Novant Health Medical Park Hospital; 2 Lenoir-Rhyne University; 3The University of North Carolina at Greensboro

Patient navigators are widely used to guide patients through the healthcare maze, providing education, financial networking, expert clinical judgment, emotional support, timely access, and continuity of care. This review examines the outcomes of different types of navigators reported in 14 studies published between 2007 and 2013. These studies all showed positive outcomes associated with navigation in identifying and overcoming barriers and increasing the timeliness of care. However, the tools used to measure outcomes varied from study to study, many had not been tested for reliability and validity, and none focused on nurse-sensitive outcomes. In addition, it is difficult to directly compare patient outcomes between studies due to the lack of information about role definition and credentialing requirements of navigators. Finally, none of the studies focused on nurse-sensitive outcomes to test the effectiveness of nurse navigators.

he role of patient navigator was created in 1990 by Harold P. Freeman, MD, who recognized disparities in healthcare access for the underserved in New York City’s Harlem African American neighborhood.1 In Freeman’s 2012 article reviewing the origin, evolution, and principles of navigation, he notes that navigators in many settings have successfully alleviated many of the barriers to cancer care, resulting in an increase in access to treatment, timely diagnosis, and effective community outreach. All of these are considered navigator outcomes. Trained laypersons were frequently used rather than nurses, and Freeman notes that the role and training should vary depending on the setting and the population of patients served.1 Freeman also notes that the American College of Surgeons Commission on Cancer mandated that patient navigation is to be one of the standards of care for cancer programs beginning in 2015, and that Congress has mandated Medicaid payment for navigator services. Today’s patient navigator guides patients through the healthcare maze, providing education, financial networking, expert clinical judgment, emotional support, timely access, and continuity of care. In 2010, Mary Ann B. Case, RN, MSN, OCN, published a review of 18 nursing studies measuring the effects of using an oncology nurse as a patient navigator.2 She reported several positive outcomes, including decreased time to diagnosis, decreased distress scores, improved aspects of quality of life, greater understanding of health problems, and greater patient satisfaction. While some of these are likely to be nurse-sensitive outcomes (ie, greater understanding of health problems), others may not need a nurse (ie, decreased distress score). In addition, Ms Case did not advocate for standardized tools measuring nurse-

sensitive outcomes. And, unfortunately, studies conducted since Ms Case’s integrative review continue to lack consistency in role definition and minimal educational requirements of the patient navigator and in outcomes being measured. Consequently, it is difficult to determine whether the navigator’s credentials (eg, nurse or nonnurse) are a determinant in patient outcomes. Despite evidence that links patient navigators to positive outcomes, there is ambiguity surrounding the role and definition of a patient navigator, including education and credentialing requirements, and a standard definition of the patient navigator role has yet to be determined. The Oncology Nursing Society (ONS) 2010 position paper on navigation notes that additional research must be done to explore, confirm, and advance navigation roles, and that metrics need to be developed to clarify the role, function, and desired outcomes of navigators. The ONS notes that earlier studies have recommended additional research on educational preparation, certification, and outcomes of navigators of all kinds.3 As a first step, this integrative review examines the most recent evidence of the outcomes of different types of navigators. A special focus was placed on the tools being used to measure navigator outcomes, as they vary from study to study.

Methods

The databases used to obtain research articles for the review included the Cumulative Index to Nursing and Allied Health Literature, PubMed, Google Scholar, and manual searches. In addition, research reports reference lists and related article links were reviewed. Key words searched used various combinations of patient navigation,

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Review of Navigators on Patient outcomes

roles, navigator, cancer, outcomes, continuity of care, timeliness, time to treatment, and nurse. In order to capture the most recent data, only articles published from 2007 to 2013 were included in the search. Articles were not limited to nursing research since the authors believed it was impor tant to collect evidence from a broad range of resources. Inclusion criteria for the review were peer-reviewed journal publications in English, available full text, research article, written in the United States, use of a type of navigator that was clearly defined, and reports of patient outcomes. In all of the studies, the patient navigator was considered the independent variable. The effects and outcomes of the navigator varied from study to study. Two studies were excluded because the primary focus was on instrument development and methodological issues in developing tools to measure patient satisfaction with navigation. These 2 studies will be discussed in the recommendations for practice. Fourteen studies met the inclusion criteria for this review. A matrix was created to analyze the studies. Authors, patient population and setting, type of study, purpose, credentials of the navigator, definition of the navigator, data collection method, tools used to collect data, outcomes/ findings of the study, study limitations, and implications for nursing were included in the matrix. The matrix was very helpful in synthesizing participants and methods, navigator credentials and role, and outcomes of the 14 studies. The authors have included the following 3 columns from the original matrix (credentials, tools used, outcomes measured)—and have abbreviated the information in each of the columns in order to create a table that is suitable for publication. These findings from the matrix are summarized in the following paragraphs (Table).

Results

Participants and Setting Overall, the number of participants in the studies included ranged from 13 to 1332. The studies were conducted at hospitals, community health centers, comprehensive community cancer centers, and outpatient clinics. The majority of the samples were drawn from urban settings in the northeastern part of the United States. Additional settings included the southeastern region and the Midwest; 2 studies did not specify their location. Half of the studies included all ethnic groups; however, 3 of the earliest studies limited the study participants to minorities4-6 and 2 of the most recent studies limited participants to the Latino population.7,8 The inclusion of minorities reflects the original patient navigator program, designed by Dr Freeman, to facilitate care of minority cancer patients1 and the 2010 position paper of the ONS.3 Eleven studies were quantitative while 3 were qualitative.

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Two of the quantitative studies were randomized controlled trials.4,6 Other quantitative studies included 3 comparison studies,5,9,10 a retrospective chart review,11 a nonexperimental descriptive study,10 a retrospective 2-study, quasi-experi mental study,7 a real-time in-person survey,12 and an evalu ative study.13 Three qualitative studies were included to capture subjective input and the human experience, both considered important aspects of patient navigation.14-16 One qualitative study examined navigated and nonnavigated patients’ reports of cancer care experiences.15 Another qualitative study focused on identification of barriers to and enhancers of completion of breast cancer treatment from the perspective of the patients.14 The third qualitative study sought to describe the key processes that navigators actually used from the perspective of the navigator.16 These different study designs resulted in the outcomes being measured varying from study to study, indicating that there is not a core set of evidence-based outcomes being measured. Purpose of the Studies Reviewed Patient navigation programs are driven by individual population needs.13 The purpose of the studies varied depending on the study population being addressed. The majority of the earlier studies limited the participants to minorities. These earlier studies measured timely diagnosis, levels of anxiety, satisfaction with care, and levels of screening.4-6 More recent studies explored the patients’ views of the impact of a patient navigator.9,10,14,15 The goal was to gain insight into the most effective and valuable aspects of patient navigation, patient preparation for treatment, overall impression of navigational services, and barriers/enhancers to completion of cancer treatment. Most recently, Sanja Percac-Lima, MD, PhD, and colleagues studied the impact of a culturally tailored navigator on cervical cancer prevention in the Latino population.8 Although significant positive outcomes were reported from the navigation group, Dr Percac-Lima placed little emphasis on the fact that the navigator was also Latina.8 Two studies examined the perspective of the healthcare providers. Pascal Jean-Pierre, PhD, MPH, and colleagues surveyed patient navigators in order to gain knowledge about the process they used when interacting with patients.16 The other study examined the staff members’ perceptions of how navigation impacted a patient’s preparation for cancer treatment.9 As the purpose varied from study to study, it is difficult to compare study findings. While it is useful to gain insight into the views of patients about navigation, using the same tools in every study may assist in meeting the call of the ONS to identify metrics to clarify the role, function, and desired outcomes of navigators.3

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Review of Navigators on Patient outcomes

Table Data as Reported in Studies Included in the Literature Review First Author/Year/Study Type/ Credentials of Purpose Navigator

Tools Used

Outcomes Measured

Battaglia et al, 2007 Quantitative, comparison study Improve rate of timely diagnostic follow-up and identify characteristics of patients

Experienced medical assistant Trained in triage and cultural competence

Preintervention group, retrospective chart review No mention of tool used Intervention group, chart review No mention of tool used

64% timely follow-up, preintervention group 78% timely follow-up, intervention group Women over 65 more likely for timely follow-up

Ferrante et al, 2008 RCT Examine timeliness to diagnosis, decreasing anxiety, and increasing satisfaction following abnormal mammogram

Social worker as a navigator with a bachelor’s degree in social relations Trained in breast health experiences

3 different tools used Diagnostic interval: obtained from chart Anxiety: Zung anxiety selfassessment scale, 20-item Likert scale Satisfaction: “Satisfaction of hospital care” survey (researcher adapted) used 15-item Lifetree-type scale

Diagnostic interval: Lower in intervention group (25.0 days) versus control group (42.7 days) Anxiety: Lower in intervention group (30.2) versus control group (42.8) Satisfaction: Higher in intervention group (4.3) versus control group (2.9)

Campbell et al, 2010 Quantitative, comparison study Determine patient and staff perceptions of patient preparation for treatment, access to care, and overall satisfaction

Not definitive Researcher-developed 10-item survey for patient-measured Depends on setting and resources available statements to PN Researcher-developed 5-item survey for providers, assess general knowledge and perceptions

Statistical significance found between 2 groups (P ≤.05) for resources, timely access, financial assistance, and satisfaction

Swanson & Koch, 2010 RN trained in cancer care Retrospective study Determine if navigation decreases distress of adult cancer patients

NCCN Distress Thermometer used No significant difference found Data gathered through retrospective Did show significant decrease in distress chart review in patients 65 years or younger

Korber et al, 2011 Qualitative study Identify barriers to and enhancers of completion of breast cancer treatment

Semistructured, open-ended questions

Most common theme: value of education and information received from navigator Completion enhancers: team approach, assistance with symptom management, access to financial and community resources

Hook et al, 2012 BSN prepared RN with oncology Quantitative, nonexperimental, descriptive study experience Explore patient satisfaction with navigation

Researcher-developed 14-item survey tool using Likert scale

97% learned new information through interaction with navigator 72% selected “strongly agree” in each survey statement when questioned about the benefits of nurse navigator

Basu et al, 2013 Quantitative, comparison study Evaluate timeliness from breast cancer diagnosis to initial oncology consult

RN, no credentials mentioned

Retrospective cancer registry review Median wait time from diagnosis to consultation was 4 days shorter for navigation group in patients 61 years or older No significant difference with wait times found in navigation group in patients 31 to 60 years of age

Percac-Lima et al, 2009 RCT Evaluate culturally tailored navigation to increase CRC screening

Lay navigator Health center outreach workers College educated Trained in aspects of patient navigation

Used navigator database to track patients’ visits

Oncology nurse

CRC screening more than double in intervention group (27.4%) versus usual care group (11.9%) Colonoscopy performed in 20.8% of intervention group versus 9.6% of usual care group Continued

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Table Data as Reported in Studies Included in the Literature Review (Continued from page 19) First Author/Year/Study Type/ Credentials of Purpose Navigator

Tools Used

Outcomes Measured

Researcher-developed interview questions

Instrumental needs: information giving, addressing financial stressors, managing insurance issues, assistance with transportation, and emotional support The most effective aspects of navigation: themes of emotional support such as being there, navigator seen as an insider

Carroll et al, 2009 Qualitative Compare navigated and nonnavigated patients Explore patients’ reports of cancer care experiences

Lay navigator 8 weeks of intensive training

Jean-Pierre et al, 2011 Qualitative Describe processes navigators use and factors that facilitate or impede navigation From the perspective of the “navigator”

Lay navigator Semistructured interview protocol High school education used No mention of actual questionnaire 3 months of training used

Donelan et al, 2011 Quantitative Compare experiences of navigated versus nonnavigated patients and establish patients’ perspective

Lay navigator Health center outreach workers College educated Trained in aspects of PN

Researcher-developed 3-page survey Striking finding was how many to measure patient-reported dimensions of the perceptions of experiences navigated and nonnavigated patients were not significantly different Navigated patients were less likely to rate a measure of cultural sensitivity as “excellent”

Percac-Lima et al, 2013 Nonexperimental, retrospective, 2-group design Evaluate effects of patient navigator on attendance, follow-up, and grade of cervical abnormality

Lay navigator Latina, Spanish speaking Trained in PN, cervical health, and cervical cancer

Telephone interviews, face-to-face visits, and home visits used to explore barriers No mention of tool used

PN Increases colposcopy clinic attendance, shortens time to colposcopy, and decreases severity of cervical abnormalities over time

Ramirez et al, 2013 Quantitative, quasiexperimental design Compare time from abnormal breast screening to diagnosis and proportions diagnosed within 30 days and 60 days between control and navigation group

Community health lay navigator No prior medical training Trained to coordinate care for those referred for diagnostic evaluation

Face-to-face interviews and chart review No mention of tool used to do data collection

Time to diagnosis lower in navigated group versus control group (20 to 27 days) Time to diagnosis significantly shorter only among navigated women with BI-RADS 3 compared with BI-RADS 4/5 (9 vs 40 days) Navigated women achieved timely diagnosis more often than women in the control group (30 days: 67.3% vs 57.7%; 60 days: 86.2% vs 78.4%)

Tejeda et al, 2013 Quantitative, real-time, in-person survey Describe barriers to care, determine recurrence of barriers, and examine factors associated with barriers

Lay navigator Attended annual and biannual webinars and in-person session education on role of navigator

Researcher-developed survey Tracking log to document patient encounters and categorize reported barriers

Latina women reported more barriers than African American women Navigators able to resolve intrapersonallevel barriers and ongoing navigation needed to address system-level barriers

Navigation process factors: instrumental and relational barriers and interventions, navigator-patient relationship Patient factors: higher level of motivation more likely to utilize PN Patients with greater needs least willing to engage in PN Navigator factors: persistence, assertiveness, flexibility External factors: social support, finances, limited healthcare access

BI-RADS indicates Breast Imaging Reporting and Data System; BSN, Bachelor of Science in Nursing; CRC, colorectal cancer; NCCN, National Comprehensive Cancer Network; PN, patient navigation; RCT, randomized controlled trial; RN, registered nurse.

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Review of Navigators on Patient outcomes

Methods Used in the Studies Eight of the studies reviewed compared nonnavigated patients with navigated patients to determine if navigation had an impact on care.4-8,10,13,17 Two of these studies were randomized controlled trials.4,6 Three of the comparison studies reviewed patient charts retrospectively,5,7,17 and the qualitative studies conducted in-depth patient interviews.14-16

Navigator Credentials

Among the 14 studies reviewed, navigator credentials varied from study to study, making it difficult to determine which type of navigator results in which outcome. In 10 of the studies, the navigators were not nurses.4-10,12,15,16 Half of the studies used lay or community health workers for navigation, and in these 7 studies, training requirements varied considerably.6-8,10,12,15,16 Two studies using lay navigators had a high school diploma at a minimum. The navigators received extensive training in helping a patient through the healthcare system.7,16 In one study the lay navigators all had a college education.6 In addition, the navigators received 6 hours of training that included performing an initial interview to identify barriers and to address other aspects of patient navigation. The final 3 studies used navigators with varied backgrounds. Tracy A. Battaglia MD, MPH, and colleagues used a navigator who is a medical assistant.5 The medical assistant had minimal clinical experience but received training to help coordinate patient care.5 A navigator with a social work background was used by Jeanne M. Ferrante, MD, and colleagues.4 The navigator had a bachelorâ&#x20AC;&#x2122;s degree in social relations and received special training to assist patients with breast cancer. In the study by Cheryl Campbell, RN, BSN, ONC, and colleagues, the credentials of the navigator depended upon the setting and resources available; therefore, no specific credentials were listed.9 Patient navigator was used interchangeably with terms like nurse navigator, care coordinator, and case manager. The ONS recommends that either a nurse or social worker supervise nonprofessional navigators and volunteers.3 The navigators in 2 studies were supervised by a social worker.12,15 The navigators in another study were supervised by a social worker and a nurse practitioner,8 and in another by the study coordinator.5 Four studies employed nurses as navigators.11,13,14,17 Jay Swanson, RN, BSN, ONC, and colleagues were the only ones who provided an in-depth description of the nurse navigatorâ&#x20AC;&#x2122;s training and background17; the others did not explicitly state the navigatorâ&#x20AC;&#x2122;s qualifications. The investigators noted the nurses provided cancer education, supportive care, and appropriate referrals. Definition of the Navigator Role Although the credentials of the navigators varied from

study to study, the definitions of the navigator role were similar in all 14 studies. In all, navigation encompassed a wide range of patient advocacy, identification of barriers to care, and coordination of care with the ultimate goal of high-quality care for individuals. Two studies identified navigation as a type of care management.5,14 In several other studies, the role of the navigator included provision of emotional and social support during the cancer journey.4,7,11,12,14,16,17 In addition, the importance of connecting patients with resources was addressed. Interestingly, only 4 of the studies identified patient education as part of the navigator role9,11,13,14 and 3 of these studies used nurses as navigators,11,13,14 which does provide some support that navigators be nurses.

Tools Used to Measure Effectiveness of Navigation

The tools used to gather data and types of data collected in the 14 studies varied considerably. Three studies gathered data through retrospective chart reviews,5,13,17 yet only 1 study noted that the project coordinator reviewed the data abstraction for completeness, accuracy, and internal consistency.5 Two of the studies collected data from navigator databases.6,13 Again, these databases may be assumed to be accurate, but the data were not confirmed with the patient records or patients themselves. In 3 of the quantitative studies, the investigators developed written survey tools9,11,12 and the 3 qualitative studies were interviews.14-16 While the investigators who developed the tools mentioned some tests of reliability and validity, each study used a different tool, and performed different reliability and validity tests.9,11,12 The investigators of 2 studies did use some standardized tools that have been tested for reliability and validity. One study measured anxiety using the Zung anxiety self-assessment scale.4 One study measured distress using the National Comprehensive Cancer Network (NCCN) Distress Thermometer.11 However, additional data were collected for both of these studies using researcher-developed tools that were not tested for reliability and validity. Findings/Outcomes of Navigation The findings/outcomes of navigation from the 14 studies can be grouped into 3 categories: identified barriers, navigation process and perceptions, and timeliness of care. Identified barriers. Identification of barriers to care is an important aspect of patient navigation, because when barriers are identified, navigators can help the patient navigate the difficulties in the healthcare system more efficiently. Three studies, all using lay navigators, identified financial stressors, managing insurance issues, transportation issues, and lack of information/education as common barriers that affect patient care.12,15,16 A common theme in each of these

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studies was the need for emotional or social support from the navigator. In fact, Jennifer K. Carroll, MD, MPH, and colleagues found that emotional support was identified as the most effective aspect of navigation.15 Navigation process and perceptions. The process of navigation varied in different geographic settings, populations, and institutions. However, the principle of navigation was constant: navigation was developed to assist patients and families to help improve fragmented care, and ultimately to improve outcomes. Four studies examined the perception of navigation and the navigational process.10,11,14,17 With the use of a lay navigator, Daniel Donelan, PhD, and colleagues compared the experiences of navigated patients and nonnavigated patients. However, the perceptions did not significantly differ and many dimensions of the care received by the 2 groups were similar.10 A cancer diagnosis can cause a high level of distress in patients and their family members. Navigation is thought to alleviate some of this distress by offering contact with the navigator in many aspects of the patient’s care. Thus, using a nurse navigator, Jay Swanson and Lisa Koch sought to determine whether navigation decreased distress levels using the NCCN Distress scale in patients.17 No significant differences in level of distress were found in patients overall; however, there was a decrease in distress in patients 65 years of age or younger. The value of education and information received from a nurse navigator was the most common theme found by Susan F. Korber, MS, RN, OCN, NE-BC, and colleagues. Patients in their study appreciated the team approach used in their care, which was facilitated by the nurse navigator. Also, assistance with managing cancer symptoms, cancer treatment, financial resources, and community resources were considered benefits of navigation.14 Similarly, in the study by Ann Hook, MSN, RN, and colleagues, 97% of navigated patients reported learning new information from their navigator; 71% to 90% “strongly agreed” with each statement on the benefits of the nurse navigator.11 Timeliness of care. The negative effects of delayed screening, follow-up of abnormal findings, and diagnosis were determining factors in the development of navigators to help improve patient outcomes. Historically, minorities and those with lower socioeconomic status were found to have later stages of cancer at time of diagnosis and worse survival rates. Navigation has been found to reduce this disparity.1 Seven of the studies reviewed here studied the effects of patient navigation on timeliness of screening, diagnostic follow-up, and diagnosis of cancer.4-9,13 Percac-Lima and colleagues conducted 2 studies examining whether patient navigation using lay navigators increased the number of patients who underwent cancer screening.6,8 Among navigated patients, the number who had colonos-

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copy screening was more than double that of nonnavigated patients: colonoscopy screening was performed in 20.8% of navigated patients and 9.6% of nonnavigated patients.6 Another positive effect of navigation was found in colposcopy clinic attendance and time to colposcopy. In the second study by Percac-Lima and colleagues using lay navigators, navigation increased the number of people who have timely colposcopies, thereby reducing the severity of cervical abnormalities.8 Timely follow-up after an abnormal finding is essential to improve cancer outcomes. All of these studies, regardless of the type of navigator, found that navigated patients had a shorter time to diagnosis than nonnavigated patients. In one study that used a medical assistant as navigator, 78% of navigated women had timely follow-up to diagnosis while only 64% of nonnavigated women had timely follow-up. Interestingly, women 65 years of age and older were more likely to have timely follow-up than women 18 to 39 years of age.5 In the study by Ferrante and colleagues, using a social worker as a navigator, women in the navigated group had a shorter interval to diagnosis than the nonnavigated group (25 days vs 42.7 days).4 A similar finding was reported in a study where the navigator credentials were not clearly defined.9 Navigated Latina patients with breast cancer were found to have an average of 20 days from time of abnormal finding to diagnosis versus 27 days for nonnavigated patients.7 In this study, the lay navigator had no prior medical training. One study, using a nurse as a navigator, focused on the time from diagnosis to consultation.13 For patients 61 years of age and older, the median wait time from diagnosis to consultation was 4 days shorter with navigation than without navigation (8 days vs 12 days). However, for patients 31 to 60 years of age, navigation was not a significant predictor of reduced wait times (9 days vs 10 days).13

Discussion

This review examined different types of navigators and patient outcomes of navigation. Overall, the use of a patient navigator was linked to positive outcomes, including identification of barriers, positive perceptions of the navigation processes, timeliness of care, timely follow-up, and decreased levels of distress. The type of navigator used was not found to affect patient outcomes. However, direct comparison of studies was difficult, because the tools used to measure the outcomes were not designed to capture specific outcomes unique to the role of patient navigators. Navigators have been used since the 1990s, but in order to advance the science of navigator effectiveness, standardized tools for data collection are needed that have been tested for reliability and validity. In addition, if the same variables such

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as distress, anxiety, and patient satisfaction were measured in every study, using the same instruments, then the effects of different types of navigators could be detected. The findings from this review reinforce the need to define the role and educational requirements for a patient navigator, and then to use reliable and valid tools to measure the unique effects of navigators with different roles, different training, and in different settings. Two methodological studies found good reliability and validity scores of the “patient satisfaction with interpersonal relationship with navigator measure” (PSN-1).18,19 One was a multisite study,18 and the second tested a Spanish version of the tool.19 The use of this tool in all future studies of navigators would provide standardized data on patient satisfaction that is specific to the navigator role. The correlation of patient satisfaction, type of navigator, and outcomes, such as timeliness of care, would be possible using the PSN-1. Limitations There are some limitations to this review. A number of the studies focused on particular populations, typically underserved, low-income minorities, which limits generalizability to the broader population. Another limitation involved the use of researcher-developed instruments with little or no discussion of the reliability and validity of the data collected. Also, collection of data retrospectively potentially contributes to poorer quality data. Despite these limitations, the studies reviewed have implications for nursing practice and nursing research. Implications for Nursing Practice and Nursing Research Four of the studies reviewed employed nurses as navigators, and their implications are reported here. Swanson and Koch pointed to the need for oncology nurse navigators to prioritize workloads given the stronger impact these navigators had on patients less than 65 years of age.17 In addition, they concluded that some patients may require navigational contact with each healthcare encounter. Korber and colleagues noted that the primary objectives of nurse navigation were to increase the number of cancer care treatment completions in women with breast cancer, and reduce the prevalence of fragmented care.14 Hook and colleagues suggested that using nurses in the navigation role has the potential to offer promising resolution of patient care inadequacies. They stressed the importance of identifying key components of effective navigation programs in solving this problem.17 Mouha Basu, MPH, and colleagues noted that further examination of the patient navigation processes could help identify methods to improve timely care for patients.13 The tools currently used to evaluate the effectiveness of patient navigators are not designed to capture the essence of

what a nurse navigator does compared with navigators who are “laypeople” or social workers. In order to capture this data, nurse-sensitive outcomes need to be clearly defined, and then specifically evaluated. For example, it is important to determine whether nurses are more effective than others in assisting patients to make treatment decisions, more effective in convincing patients to seek follow-up, and more effective in helping patients to cope with and overcome the effects of chemotherapy. In acute care, the rates of nosocomial infections and pressure ulcers are considered nurse-sensitive outcomes. What are the nurse-sensitive outcomes for cancer outpatients? The ONS position paper does not specifically identify what the appropriate, nurse-sensitive, evidence-based outcome measures should be.3 Many other questions need to be addressed in order to evaluate whether a nurse needs to be a navigator. It may be that a group of 3 to 5 layperson navigators could meet regularly with 1 nurse navigator to review the caseload and is available for referral when the special knowledge and experience of a nurse is needed. In addition, there may be a role for an advanced practice navigator who not only helps patients with education, financial networking, emotional support, and timely access and continuity of care, but also uses expert clinical judgment to diagnose and treat some of the clinical manifestations patients experience as they go through cancer treatment. This advanced practice nurse could be especially helpful with end-of-life care planning, and help to overcome the problem of too short a stay in palliative care and hospice care.

Conclusion

The evidence supporting the use of patient navigators, not only for cancer patients but also patients with other chronic diseases, continues to grow. Despite the positive outcomes of identifying and overcoming barriers, emotional support, and timeliness of care associated with patient navigation, there is still a paucity of information on role definition and credentialing requirements. Future research can be directed toward designing studies that compare the outcomes of nurse navigators, lay navigators with minimal training, and lay navigators with comprehensive training, using tools that have been tested for reliability and validity. This review suggests that the ONS 2010 call to identify metrics to clarify the role, function, and outcomes of navigators has not been answered.3 Additional nursing research with tools designed to capture nurse-sensitive outcomes is also needed to address the unique role nurse navigators can play as patient advocates, educators, and facilitators. g Acknowledgment The authors gratefully acknowledge the inspiration, vision

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and editorial assistance of Elizabeth Tornquist, MA, FAAN, with this manuscript. Author Disclosure Statement: All authors have nothing to disclose. Corresponding Author: Donald D. Kautz, RN, PhD, CRRN, CNE, ACNS-BC, Associate Professor of Nursing, The University of North Carolina at Greensboro, PO Box 26170, Greensboro, NC 27402-6170. E-mail: ddkautz@uncg.edu.

References

1. Freeman HP. The origin, evolution, and principles of patient navigation. Cancer Epidemiol Biomarkers Prev. 2012;21(10):1614-1617. 2. Case MA. Oncology nurse navigator: ensuring safe passage. Clin J Oncol Nurs. 2011;15(1):33-40. 3. Oncology Nursing Society. Oncology Nursing Society, the Association of Oncology Social Work, and the National Association of Social Workers joint position on the role of oncology nursing and oncology social work in patient navigation. www.ons.org/about-ons/ons-position-statements/education-certification-androle-delineation/oncology-nursing-0. Accessed February 26, 2014. 4. Ferrante JM, Chen PH, Kim S. The effect of patient navigation on time to diagnosis, anxiety, and satisfaction in urban minority women with abnormal mammograms: a randomized controlled trial. J Urban Health. 2008;85(1): 114-124. 5. Battaglia TA, Roloff K, Posner MA, Freund KM. Improving follow-up to abnormal breast cancer screening in an urban population: a patient navigation intervention. Cancer. 2007;109(2 suppl):359-367. 6. Percac-Lima S, Grant RW, Green AR, et al. A culturally tailored navigator program for colorectal cancer screening in a community health center: a randomized, controlled trial. J Gen Intern Med. 2009;24(2):211-217. 7. Ramirez AG, Perez-Stable EJ, Penedo FJ, et al. Navigating Latinas with breast screen abnormalities to diagnosis: the Six Cities Study. Cancer. 2013;119

(7):1298-1305. 8. Percac-Lima S, Benner CS, Lui R, et al. The impact of a culturally tailored patient navigator program on cervical cancer prevention in Latina women. J Womens Health (Larchmt). 2013;22(5):426-431. 9. Campbell C, Craig J, Eggert J, Bailey-Dorton C. Implementing and measuring the impact of patient navigation at a comprehensive community cancer center. Oncol Nurs Forum. 2010;37(1):61-68. 10. Donelan K, Malihot JR, Dutwin D, et al. Patient perspectives of clinical care and patient navigation in follow-up of abnormal mammography. J Gen Intern Med. 2011;26(2):116-122. 11. Hook A, Ware L, Siler B, Packard A. Breast cancer navigation and patient satisfaction: exploring a community-based patient navigation model in a rural setting. Oncol Nurs Forum. 2012;39(4):379-385. 12. Tejeda S, Darnell JS, Cho YI, Strolley MR, Markossian TW, Calhoun EA. Patient barriers to follow-up care for breast and cervical cancer abnormalities. J Womens Health. 2013;22(6):507-517. 13. Basu M, Linebarger J, Gabram SG, Patterson SG, Amin M. Ward KC. The effect of nurse navigation on timeliness of breast cancer care at an academic comprehensive cancer center. Cancer. 2013;19(14):2524-2531. 14. Korber SF, Padula C, Gray J, Powell M. A breast navigator program: barriers, enhancers, and nursing interventions. Oncol Nurs Forum. 2011;38(1):44-50. 15. Carroll JK, Humiston SG, Meldrum SC, et al. Patients’ experiences with navigation for cancer care. Patient Educ Couns. 2010;80(2):241-247. 16. Jean-Pierre P, Hendren S, Fiscella K, et al. Understanding the process of patient navigation to reduce disparities in cancer care: perspectives of trained navigators from the field. J Cancer Educ. 2011;26(1):111-120. 17. Swanson J, Koch L. The role of the oncology nurse navigator in distress management of adult inpatients with cancer: a retrospective study. Oncol Nurs Forum. 2010;37(1):69-76. 18. Jean-Pierre P, Fiscella K, Winters PC, et al. Psychometric development and reliability analysis of a patient satisfaction with interpersonal relationship with navigator measure: a multi-site patient navigation research program study. Psychooncology. 2012;21(9):986-992. 19. Jean-Pierre P, Fiscella K, Winters PC, et al. Cross-cultural validation of a patient satisfaction with interpersonal relationship with navigator measure: a multisite patient navigation research study. Psychooncology. 2012;21(12):1309-1315.

Who Will Be the ONE?

The Oncology Nurse Excellence Award Winner The Oncology Nurse-APN/PA® (TON ) is pleased to announce the 2014 ONE (Oncology Nurse Excellence) Award. This annual award recognizes an oncology nurse for outstanding contribution to oncology nursing practice, patient care, or education in 2014. The 4 leading nominees will be profiled online and in the August issues of TON and the Journal of Oncology Navigation & Survivorship ® (JONS). Readers will have an opportunity to nominate an individual online through June 2, 2014, and the winner will be announced at the Fifth Annual Academy of Oncology Nurse & Patient Navigators (AONN+) Conference, September 18-21, 2014, in Orlando, Florida, and profiled in the December issues of TON and JONS. The winner will also receive a plaque recognizing their contribution to oncology nursing, as well as a donation made to the charity of their choice in their name.

Nominate a nurse at TheOncologyNurse.com/one-award

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TONONEAwardFill_33114

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*The VELCADE Reimbursement Assistance Program does not file claims or appeal claims for callers, nor can it guarantee that you will be successful in obtaining reimbursement

VELCADE and Millennium are registered trademarks of Millennium Pharmaceuticals, Inc. Other trademarks are property of their respective owners. Millennium Pharmaceuticals, Inc., Cambridge, MA 02139 Copyright ÂŠ 2010, Millennium Pharmaceuticals, Inc. All rights reserved. Printed in USA

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Y EA R A N N I V E R S A RY

FIFTH ANNUAL

Navigation and 5 Survivorship Conference YEAR

A N N I V E R S A RY

September 18-21, 2014 Walt Disney World Dolphin Hotel • Orlando, Florida

TO DATE, THE CONFERENCE HAS HAD MORE THAN:

1,700

107

Total Attendees

Abstracts

Thank you again for a wonderful conference on the conference to my administration each year to help me get funding for the following year and so far...so good. I attend various national conferences throughout the year and stand amazed at your ability to continue

Expert Speakers

60 Abstracts Submitted

(only missed your first year). I submit a report

to provide new and motivating presentations. – 2013 Conference Attendee

93%

108

93% of 2013 conference attendees said they intended to change their practice as a result of participating in the AONN+ Conference

50 40 30 20

20 10 0

9 2010

2011

2012

2013

Year of Submission

“WOW! I am so impressed with the growth of AONN. Lillie, Sharon, and their team are awesome. The speakers were knowledgeable about their subject matter and all the presentations were relevant to my practice. I will use the pearls of wisdom shared by the speakers to my team at

97%

97% of 2013 conference attendees rated the AONN+ Conference as Above Average or Excellent when compared with other continuing education activities

home. I arrived feeling we have a pretty good program and I am leaving with ideas to share to make it even better!” – Donna Moore Wilson, BSN, RN, CBCN Oncology Nurse Navigator Bon Secours Cancer Institute Richmond, Virginia AONN+ A-SIZE_22414

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Fourth Annual AONN+ Conference

The Role of Complementary Therapies in Navigation Lisa A. Raedler, PhD, RPh Memphis, TN—One of the most popular presentations at the 4th Annual Navigation and Survivorship Conference of the Association of Oncology Nurse & Patient Navigators (AONN+) was delivered by Linda A. Lee, MD, AGAF. Dr Lee is the Clinical Director of the Division of Gastroenterology and Hepatology at Johns Hopkins Integrative Medicine and Digestive Center in Baltimore. As an expert in the diagnosis and management of gastrointestinal complications of stem cell transplantation, Dr Lee appreciates the increasing interest patients with cancer have in complementary and alternative medicine (CAM), including massage therapy, acupuncture, and probiotic supplements.

• Does the patient have concerns about conventional therapy? What are those concerns? • Do the patient’s values and cultural beliefs affect his or her choices? How? • How can you, the patient’s nurse navigator, support him or her in this decision-making process? Can you facilitate referral to individuals who can help in the care of the patient? In this context, Dr Lee reminded the group, “It is really important to remember that, when we talk with patients who want to use alternative therapies, we need to be very respectful. Some of these ideas come to them in ways other than scientific papers.”

What Is Integrative Medicine?

Dr Lee appreciates the increasing interest patients with cancer have in complementary and alternative medicine, including massage therapy, acupuncture, and probiotic supplements.

Integrative medicine represents the intersection of conventional medical treatments and other healing modalities to allow for comprehensive management of a patient’s condition. To help navigators understand relevant terminology, Dr Lee clarified that alternative therapies are therapies that patients choose in lieu of conventional therapy. They may or may not have scientific evidence, and are often sought after based on knowledge that patients have acquired from friends, family members, and/or media, including the Internet. In contrast, complementary therapies are used as adjuncts to conventional medical treatments. Dr Lee explained that the concept of partnering critically evaluated nonconventional therapies with conventional medical treatments, or integrative medicine, is particularly popular among academic centers. “We use the term integrative medicine because it conveys that we are looking for evidence-based therapies to support conventional care.” Proactive discussion with patients with cancer of effective (traditional and nontraditional) supportive care measures is especially relevant in light of the myriad of disease- and drug-related adverse events these patients have. Examples include pain, neuropathy, fatigue, insomnia, osteoporosis, loss of libido, chemo brain, depression, and hot flashes. Dr Lee outlined several important questions to ask when counseling a patient with cancer who has expressed interest in CAM: • Why is the patient seeking CAM? What is the patient hoping to achieve by using this treatment?

Evidence for CAM in Cancer Patients

After introducing navigators to CAM, Dr Lee reviewed literature-based evidence supporting some of the most common modalities about which her patients express interest: acupuncture, massage therapy, nutrition and dietary supplements, and cognitive behavioral therapies. She prefaced her review with the caveat that the literature for these therapies can be challenging, “You are not going to find randomized placebo-controlled trials performed on thousands of people.” Because the clinical development of CAM is typically not supported by large pharmaceutical or biotechnology firms, trials of CAM modalities are typically small with short-term follow-up. An additional challenge in trials of CAM is identification of valid placebos; Dr Lee provided specific examples when summarizing each type of CAM. Acupuncture Acupuncture consists of a series of procedures that involve penetration of the skin with needles to stimulate certain points on the body. Classical acupuncture is a component of traditional Chinese medicine.

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Dr Lee noted a significant debate among CAM researchers regarding the use of placebo controls in studies of acupuncture for cancer pain. Although acupressure has been recommended, it is problematic as a placebo according to Dr Lee. If pressure is applied to the same points in which the acupuncturist would place a needle, at least theoretically, the patient might realize a positive effect from acupressure. “I think the way to go is to compare therapies like acupuncture to therapies that we use right now, like a pharmacologic agent,” Dr Lee noted. “While it is not a true placebo, if you think about it from the patient’s point of view, this is often what they are going to decide, whether or not to use an alternative therapy or a medical therapy.”

Acupuncture can have value in patients who are trying to alleviate depression, anxiety, hot flashes, fatigue, insomnia, and neuropathy. To date, studies of acupuncture have shown value in reducing chemotherapy-induced nausea and vomiting when performed before chemotherapy. Dr Lee recalled that the American College of Chest Physicians also recommends acupuncture for patients with lung cancer and poorly controlled pain, or patients with adverse events such as neuropathy and xerostomia that are clinically significant. Acupuncture can have value in patients who are trying to alleviate depression, anxiety, hot flashes, fatigue, insomnia, and neuropathy, Dr Lee suggested. “A very interesting study comparing acupuncture to venlafaxine showed that it is just as effective and has more durable benefits for patients with hot flashes.” Although the mechanisms by which acupuncture exerts clinical effects are unclear, several researchers have proposed that it alters brain function, mood, and pain modulation. Acupuncture might affect autonomic nervous system activity, endogenous opioid release, and the function of neuro transmitters and receptors that block pain stimulation. “I tell people to try acupuncture 4 or 5 times,” Dr Lee stated. “If they see no improvement, then it is probably not going to work. I remind them that medications do not work for everybody, either. Going for 4 or 5 sessions usually gives an idea about whether acupuncture is going to be helpful.” Massage Therapy Massage is the manipulation of superficial and deeper layers of muscle, and connective tissue, using various techniques to enhance mobility and function, aid in healing, and promote relaxation and well-being. When introducing this topic, Dr Lee professed that she is a “huge believer” in

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massage therapy for chronically ill patients, including people diagnosed with cancer. “I meet people all the time who tell me they were perfectly healthy and then X happened. They are psychologically devastated. They were running, they were eating a healthy diet, and then, boom, they got cancer. It is normal to feel angry and disgusted with your body or to feel that your body let you down. One of our massage therapists explained to me how important it is to help each patient to reestablish a positive relationship with his or her body.” It is very important for massage therapists who are treating patients with cancer to have specialized training in oncology massage, in addition to being a licensed massage therapist, according to Dr Lee. “We look for therapists who have worked not only in spas, but in hospitals. We deal with very complicated and complex patients. It is impor tant that the therapists understand and pay attention to the unique medical needs of our patients.” Dr Lee noted that clinical studies of massage therapy in patients with cancer show that the most consistent benefit is in the context of anxiety and depression, as well as some types of pain. “Many patients would rather have massage therapy than take an antidepressant or a benzodiazepine every day.” In the past, massage was thought to increase circulation and cause cancer to spread. Dr Lee clarified that, while the process of metastasis is very complicated and poorly understood, increased circulation is not considered a significant part of that process. Nutrition and Dietary Supplements Patients with cancer typically query Dr Lee, a gastroenterologist, about nutrition and vitamins. Common questions include: Should I take a multivitamin? Should I use a food supplement, such as Ensure or Boost? Will taking supplements help me feel better? Will supplements help to fight my cancer? Dr Lee described that she is not a “huge prescriber” of nutritional supplements. She generally believes that people who are able to ingest food and who have an intact gastrointestinal system should eat healthy foods, either whole or pureed, rather than use supplements or multivitamins. “I tell patients that the adverse effects of supplements are not always known. Supplements’ interactions with drugs are also often unknown.” For detailed advice about supplements, Dr Lee strongly urges her patients with cancer to consult with the hospital’s nutritionists. Working with nutrition counselors, physicians and nurses can ensure that patients learn how to maintain their nutritional status during cancer-directed therapy and afterwards. “This is the best way to boost the immune system.”

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When addressing use of probiotics—microorganisms such as lactic acid bacteria and bifidobacteria that may provide health benefits when consumed—Dr Lee noted that data are limited regarding their clinical value in cancer patients. “There is only 1 report that a very specific probiotic preparation, VSL #3, reduces radiation-induced diarrhea.”2 Dr Lee provided specific examples of patients who are unlikely to benefit from or who may be harmed by probiotics, including patients receiving total parenteral nutrition through a central venous catheter and patients with small bowel ulceration, such as those with graft versus host disease. She noted that a probiotic formulation containing Saccharomyces boulardii (Florastor) has been associated with higher rates of sepsis in people with central lines. Because supplement and vitamin use is very common among patients with chronic illness, including cancer patients, Dr Lee reminded navigators of the importance of open communication. “I tell patients how important it is to communicate with their oncologists and nurses [about their use of and questions about CAM]. The good news is that, according to survey data, patients with cancer are more likely to disclose to us that they use complementary therapies compared with the average population. We just have to ask.” Dr Lee summarized her thoughts regarding other common myths related to diet, nutrition, and cancer among her patients with cancer: • “Because cancer cells thrive on glucose, patients should restrict carbohydrate and sugar intake.” Dr Lee noted that some cancer patients adamantly avoid sugar because it might “feed” their cancer. She clarified that, while cancer cells thrive on glucose, eating sugary foods or carbohydrates does not preferentially drive glucose toward cancer cells or affect cancer growth. • “Once you have had cancer, being overweight has no bearing on cancer recurrence.” Dr Lee clarified that maintaining both good nutritional status and healthy weight after cancer treatment is highly important. Particularly in breast cancer, it has been documented that obesity correlates with hyperinsulinemia, which drives androgen and estrogen production, and that can result in breast cancer recurrence. In this context, Dr Lee summarized results of a 2006 study known as the Women’s Intervention Nutrition Study.3 In this research effort, approximately 2500 women with a history of breast cancer were randomized to either a low-fat (33 g of fat daily) or a controlled diet (51 g of fat daily) and were followed for more than 5 years. Study results showed that the low-fat diet group had a 3.7% difference in body weight at the end of the study, which was associated with a 24% difference in breast cancer recurrence risk. “Just a little bit of weight loss seemed to be

beneficial in terms of breast cancer recurrence….I am always on my patients about maintaining their weight at a normal body mass index,” Dr Lee summarized. Cognitive Behavioral Therapy To introduce mind/body therapies and their role in cancer patient management, Dr Lee stated, “I am a strong believer that, not only do we want to pay attention to patients’ diet and nutrition, we need to figure out what is going on with their psychological health.” She observed that when patients with cancer are anxious, they are often unable or unwilling to state this. They, or their caregivers will, however, describe 1 or more related symptoms, which can include difficulty sleeping, fatigue, diarrhea or constipation, worsening pain, appetite and/or weight changes, headaches, and changes in cognition.

The goal of CBT is to help people understand how their cognitions (thoughts), emotions, and behaviors interact and affect one another. Dr Lee characterized cognitive behavioral therapy (CBT) as a technique performed by trained mental health professionals, usually over multiple sessions. The goal of CBT is to help people understand how their cognitions (thoughts), emotions, and behaviors interact and affect one another. “CBT does not tell someone how to feel, but it can change their response to stress.” Dr Lee noted that many studies support the ability of CBT to reduce anxiety and depression. “I think all of our patients should be engaged in this. I think if you can offer CBT in your center, it really takes away the stigma versus sending them to the department of psychiatry.”

Paying for CAM

A significant challenge associated with CAM includes accessing and paying for these specialized services. To help navigators appreciate the costs involved, Dr Lee estimated that in her area of the country, nutritional counseling is billed at approximately $150 for the initial visit, which can last from 1 to 2 hours. Massage therapy costs $80 for a 1-hour session, and private acupuncture services can range from $85 to $150 per session. Most of her patients pay out of pocket for these services. Insurance coverage for CAM is rare and varies greatly depending on state laws, regulations, and patients’ specific insurance plans. Dr Lee noted that, in her experience, some private insurance plans reimburse for acupuncture and psychotherapy. Medicare reimburses for nutritional counseling

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only for patients with diabetes and kidney disease, and CBT may be covered under workers’ compensation. To facilitate patient access to CAM, both Dr Lee and audience members highlighted the importance of professionals who volunteer their services, as well as philanthropic individuals and organizations, in funding CAM. “At our breast cancer survivor retreats, we have been fortunate enough to have volunteers: massage therapists, Reiki masters, yoga masters, and experts in healing touch,” one of the audience members stated. “They are amazing!”

Advice for Navigators

To conclude her comprehensive lecture, Dr Lee summarized important take-home advice for navigators regarding CAM: • To prepare for patients’ inquiries, familiarize yourself with commonly used CAM modalities: acupuncture, massage therapy, nutrition and diet counseling, and CBT, as well as traditional Chinese medicine, Ayurvedic medicine, naturopathy, homeopathy, yoga, and meditation. • Identify and refer patients to CAM practitioners whom you trust and with whom you can collaborate. If your university or hospital has an integrative medicine center, start there. Learn how these practitioners are trained

and if they are licensed in your state. Dr Lee noted that the National Center for Complementary and Alternative Medicine, the federal government’s lead agency for scientific research on CAM, offers a comprehensive website (http://nccam.nih.gov/health/providers) with news and research summaries related to CAM, as well as advice regarding finding CAM specialists. • Realize that patients with cancer often look to CAM therapies as a way to mitigate symptoms and gain control, rather than as a cancer cure. Talk with them so that you understand their motivations. • Be highly respectful of patients’ ideas and decisions. To ensure that you are engaged with the patient (rather than alienating them), approach discussions of CAM in a supportive and open-minded fashion. g

References

1. Walker EM, Rodriguez AI, Kohn B, et al. Acupuncture versus venlafaxine for the management of vasomotor symptoms in patients with hormone receptor–positive breast cancer: a randomized controlled trial. J Clin Oncol. 2010; 28(4):634-640. 2. Delia P, Sansotta G, Donato V, et al. Use of probiotics for prevention of radiation-induced diarrhea. World J Gastroenterol. 2007;13(6):912-915. 3. Women’s Intervention Nutrition Study (WINS). www.cancer.gov/clinical trials/search/view?cdrid=63537&version=healthprofessional. Accessed March 14, 2014.

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april 2014 • Volume 5, number 2

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Now enrolling Investigating ABT-199 (GDC-0199) in Chronic Lymphocytic Leukemia Phase II Open-Label Study of the Efficacy and Safety of ABT-199 in Patients With Relapsed or Refractory Chronic Lymphocytic Leukemia Harboring the 17p Deletion N=100

ABT-199 is an investigational agent that has not been approved by regulatory agencies for the use under investigation in this trial. Primary Endpoint

Secondary Endpoints

• Overall response rate

• • • • • • • •

Complete remission rate Partial remission rate Duration of response Progression-free survival Time to progression Overall survival Percentage of patients who move on to stem-cell transplant Safety and tolerability of ABT-199

Key Inclusion Criteria • Adult patients ≥18 years of age • Diagnosis of CLL that meets 2008 IWCLL NCI-WG criteria (relapsed/refractory after receiving ≥1 prior line of therapy and 17p deletion) • ECOG performance score of ≤2 • Adequate bone marrow function • Adequate coagulation, renal, and hepatic function, per laboratory reference range

NCT#01889186 Reference: ClinicalTrials.gov.

To learn more about this study, please visit www.ClinicalTrials.gov.

Fourth Annual AONN+ Conference

Thoracic Cancer Navigation Lisa A. Raedler, PhD, RPh

Memphis, TN—On Sunday, November 17, 2013, a series of breakout sessions were conducted to highlight navigation challenges in the context of specific tumor types. Experts in the development of navigation programs and services for patients with breast cancer, colorectal cancer, gynecologic cancer, pediatric oncology, and others shared their experiences and advice. The breakout session on thoracic oncology navigation, titled “Lung Cancer Screening: Where Are We Now?” was led by Gean Brown, RN, OCN. Ms Brown is the Clinical Manager and Lung Screening Coordinator at the Middlesex Hospital Cancer Center in Middletown, Connecticut. She oversees the cancer center’s oncology nurse navigators, as well as the surgical alliance. Ms Brown also held several board positions in Central Connecticut’s Oncology Nursing Society, and is a member of the Academy of Oncology Nurse & Patient Navigators (AONN+). Ms Brown began by acknowledging the value of AONN+’s annual meetings. She recalled being inspired to initiate a lung cancer screening program at her community-based hospital after hearing a past AONN+ lecture. “This is my fourth year coming here; I love this conference!” The breakout session on lung cancer screening had 4 objectives: • Describe the National Lung Screening Trial and its screening criteria • Outline a standardized approach to implementing a lung screening program • Identify sources of lung nodule management guidelines • Define the role of the navigator in lung cancer screening. Before addressing these topics, Ms Brown reminded navigators in her session that lung cancer accounts for 30% of deaths from cancer in the United States; its 5-year survival rate is only 15%. Because half of the adults in the United States have a smoking history, they remain at higher risk for lung cancer even if they quit.

The Value of Lung Cancer Screening

Ms Brown then reviewed groundbreaking studies of lung cancer screening. From 2002 through 2004, the National Lung Screening Trial (NLST) conducted a study comparing 2 ways of detecting lung cancer: low-dose helical computed tomography (CT) and standard chest x-ray.1 More than 53,000 people between 55 and 74 years of age with a smoking history of at least 30 pack-years were randomized to be screened using one of those methods.1 The investigators determined that patients who received low-dose helical CT scans had a 20% lower mortality risk from lung

april 2014 • Volume 5, number 2

cancer compared with patients who received standard chest x-rays. Published in 2010, and updated in 2013, this decade-long study established low-dose helical CT as the first validated screening test that can reduce mortality due to lung cancer, according to Ms Brown. The American Lung Association has estimated that 7 million of the 94 million current and former smokers in the United States fit the high-risk demographic criteria used in the NLST. The American Cancer Society believes that approximately 8.6 million smokers meet the criteria. Consequently, the NLST reported that screening could potentially avert up to 12,000 or 7.6% of total lung cancer deaths reported each year.

This decade-long study established low-dose helical CT as the first validated screening test that can reduce mortality due to lung cancer. Citing another large screening study, the International Early Lung Cancer Action Project (I-ELCAP), Ms Brown states that 85% of 484 lung cancers detected by CT scan were stage I or highly treatable. These patients have an expected 10-year survival of approximately 88%. Ms Brown recalled that critics of the I-ELCAP study highlight the lack of randomization (ie, all patients received CT scans). However, based on this study, it is generally accepted that CT screening facilitates detection of lung cancer at its earliest, most curable stage, Ms Brown explained. Based on these 2 large research efforts, the US Preventive Services Task Force (USPSTF) published a recommendation for lung cancer screening in July 2013. Screening is recommended for current and former smokers aged 55 to 80 years with a smoking history equivalent to a pack a day for 30 years or 2 packs a day for 15 years.2 Because the USPSTF recommendation was given a “B” rating, insurers must reimburse CT scans as a free preventive service to patients according to the Affordable Care Act. Ms Brown highlighted data from an actuarial analysis published in April 2012. This analysis documented that the cost per life-year saved with lung cancer screening is less than $19,000, which compares favorably with screening for cervical, breast, and colorectal cancers. By enhancing access to lung cancer screening, these data and the USPSTF recommendation can significantly enhance outcomes and care for lung cancer patients. To under-

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Fourth Annual AONN+ Conference

Table Patient Selection Criteria for Lung Cancer Screening National Comprehensive Cancer Network

• Age 55 to 74 years, ≥30 pack-years, smoking cessation ≤15 years, OR age ≥50 to 74 years, ≥20 pack-years, and 1 additional risk factor other than secondhand smoke • COPD or pulmonary fibrosis diagnosis, radon exposure, occupational exposures such as asbestos or diesel fumes, personal history of cancer, family history of cancer

American Society of Clinical Oncology/ American College of Chest Physicians

• Patients who meet NLST criteria • No screening if <55 or >74 years of age and smoking cessation >15 years • Screening is not recommended if comorbidities preclude curative treatment for lung cancer

American Association of Thoracic Surgery

• Age 55 to 79 years with ≥30 pack-years, OR • Age ≥50, ≥20 pack-years, and additional cumulative ≥5% risk of developing lung cancer over 5 years • Risk factors including COPD with FEV1 <70%, environmental or occupational exposures, prior cancer or thoracic radiation, family history • Lung cancer survivors who have completed 4 years of surveillance without recurrence and who are able to tolerate treatment should be screened

COPD indicates chronic obstructive pulmonary disease; FEV1, forced expiratory volume in 1 second; NLST, National Lung Screening Trial.

score the importance of this national recommendation, Ms Brown quoted Laurie Fenton Ambrose, leader of an advocacy group known as the Lung Cancer Alliance: “Tens of thousands of lives could be saved. Screening those at high risk…will open the door to much faster advances in research on all stages of lung cancer. This is a game changer.”

Steps in Developing a Lung Cancer Screening Program

“Lung cancer screening is a clinical diagnostic process, not just 1 test,” Ms Brown stated, prefacing her discussion of hospital-based lung cancer screening programs by highlighting the importance of developing a comprehensive effort. “If you find a nodule, you have to follow it. You need a tracking system. You need physicians to whom you can refer patients. It is a whole system.” Starting a lung cancer screening program should include the following steps: • Define patient selection criteria • Identify equipment and define protocol for low-dose CT scanning • Determine whether patients will need a referral or physician order for screening • Determine whether patients will be charged for screening • Develop patient-tracking and follow-up systems • Develop and implement a smoking cessation effort • Build a multidisciplinary team: administration, navigator, radiology, thoracic surgery, pulmonary, medical oncology, radiation oncology, marketing • Develop a data collection system to track the program’s outcomes. Ms Brown summarized 3 sets of lung cancer screening guidelines that have been adopted by expert groups (Table).

She noted that her community hospital in Connecticut currently uses National Comprehensive Cancer Network (NCCN) guidelines for patient selection. She predicted, however, that the NCCN criteria—and those of the American Society of Clinical Oncology/American College of Chest Physicians—are likely to expand and encompass people who have ceased smoking more than 15 years prior to screening. When discussing equipment and imaging protocols, Ms Brown described that, because it uses thinner images and detects small lung nodules, helical multidetector CT of the chest is recommended. While there is no strict definition of “low-dose” CT, 10% to 30% of standard-dose CT is typically used.

“Tens of thousands of lives could be saved. Screening those at high risk… will open the door to much faster advances in research on all stages of lung cancer. This is a game changer.” In the lung cancer screening program she is affiliated with, patients are required to have a physician’s order, typically from a primary care physician. In other cancer centers, such as the Lahey Clinic in Boston, radiologists initially evaluate patients and then order low-dose helical CT scans, Ms Brown noted. The Lung Cancer Alliance recommends that lung screening CTs are read by trained radiologists to ensure that lung nodules are identified accurately. Patient follow-up is a critical component of successful lung cancer screening programs. A formal system, either electronic or paper-based, must be developed to ensure

JONS-online.com journal of Oncology Navigation & Survivorship

Fourth Annual AONN+ Conference

Figure Patient Algorithm for Lung Cancer Screening Program

Client calls

Collection of client information and triage for screening qualifications

target physicians and other healthcare providers, as well as patients and advocacy organizations, with information about the screening program and its benefits. Brochures, websites, and other communications are valuable for explaining the program and its importance.

Debates in Lung Cancer Screening

Similar to mammography and prostate- specific antigen screening, lung cancer screening has the potential to be both beneficial and Client qualifies harmful. A screening effort is effective only Client does for screening not qualify when its benefits outweigh harms. In lung cancer screening, false-positive results can Payment lead to unnecessary biopsies and surgery. completed However, research also demonstrates that screening saves lives by detecting resectable Authorization early-stage lung cancers. signed “Clearly, any screening program needs to Nurse navigator ensures balance lowering the frequency for positive LDCT client follow-up with a results with the resulting delay in the diagnoperformed provider, preferably within a multidisciplinary sis of lung cancer, which in some cases, may pulmonary nodule clinic lead to stage progression and thus a decrease Results letter Results Nurse navigator/ sent to client distributed tracker in curability,” Ms Brown stated, quoting Claudia Henschke, MD, of Mount Sinai Medical PCP or pulmonary Center, an investigator in I-ELCAP. nodule clinic visit Prescribing Primary care provider provider When discussing false positives in lung cancer screening, Ms Brown noted that differNodule(s) detected No nodules ent thresholds for lung nodule size have been on LDCT detected on LDCT proffered. For example, I-ELCAP uses a nodule diameter of 5 mm (any nodule smaller than 5 mm is considered negative), while the Based on nodule size recommend follow-up Recommend annual treatment protocol; may include multidisciplinary LDCT for lung NLST uses a threshold of 4 mm. Because of team evaluation cancer screening improved imaging, chances of finding small nodules (ie, false positives) with CT screening are increasing. Experts debate the appropriate LDCT indicates low-dose computed tomography; PCP, primary care provider. Copyright © 2013 criterion and many predict it will change. Covidien. All rights reserved. Used with the Permission of Covidien. Ms Brown also suggested that identification of a small lung nodule should not be interpatients are not lost to follow-up. For example, high-risk preted as a false positive at all; this terminology may be patients whose CT scans are negative should be scanned inappropriate. “Small nodules are not necessarily false again in 1 year; a process must be in place to remind positives. It is still a nodule. It might not be lung cancer, them. To this end, Ms Brown shared an algorithm that but still, something needs to be done. It could be somehas been developed by Covidien that lists specific decithing else. Calling it a false positive seems wrong to me.” sion points, as well as steps involved in patient screening To address risks associated with lung cancer screening, and follow-up (Figure). organizations that have published screening guidelines “Navigator is the most important part of the team,” Ms have also documented the rate of false-positive results. Brown noted. “In our hospital, the nurse navigator is the These organizations strongly emphasize the importance of one who coordinates the lung screening program, collects informed decision-making by patients, reinforcing the data, and ensures that patients are followed.” importance of navigators in counseling these patients and Marketing a new lung cancer screening program is a very their families, Ms Brown noted. important component. Local and regional efforts should A second area of debate relates to patient follow-up

april 2014 • Volume 5, number 2

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Fourth Annual AONN+ Conference

after screening. The original I-ELCAP study included 3 annual screenings, she explained. If the first lung screening is negative, then a second is performed 1 year later. If the second screening is negative, another scan is performed the following year. If this one was negative, no further screening was recommended. Many experts, however, suggest that screening for these high-risk patients should continue indefinitely, according to Ms Brown.

A patient who required lung cancer surgery to remove a stage IA nodule generated over $60,000 in revenue from April 2012 through November 2013. Approximately 5% of patients who have had a negative baseline result developed a lung nodule 1 year later, stated Ms Brown. In addition, she noted that most screened patients have 1 risk factor for lung cancer, such as family history and/or lung disease. Ms Brown reminded navigators that those risk factors do not “go away” after 3 years. At this time, NCCN screening guidelines state that consensus has not been reached regarding when or if screening should cease for high-risk individuals.3

Lung Cancer Screening Data Collection

Data collection is critical for justifying the program’s clinical and financial value. Ms Brown outlined several key statistics that should be collected and documented each month: • CT screenings performed • Number of lung nodules identified • Number of biopsies performed • Number of cancers identified • Patients’ current smoking status • Smoking cessation program enrollment • Patient referral sources • Downstream revenue: biopsies, CT scans, physician visits, smoking cessation programs. When discussing hospital revenue, Ms Brown provided statistics related to patients participating in her community hospital’s program: A patient who required lung cancer surgery to remove a stage IA nodule generated over

FIFTH ANNUAL

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$60,000 in revenue from April 2012 through November 2013. Another surveillance patient—one in whom no nodules have been found—generated over $13,000 from May 2012 to November 2013 for follow-up CT scans. Hospital administration often focuses on data like these to justify program funding.

Lung Cancer Screening Program Information and Software Resources

Navigators can find additional information and tools regarding lung cancer screening at the following websites: • International Early Lung and Cardiac Action Program (I-ELCAP): www.ielcap.org • Lung Cancer Alliance: www.lungcanceralliance.org • National Lung Cancer Partnership: www.freetobreathe.org • Lahey Clinic: www.lahey.org/lungscreening • C-Change: www.c-changetogether.org Ms Brown concluded her presentation with a list of oncology-specific software programs that are designed to help patient and nurse navigators schedule, track, organize, and report their interactions with cancer patients: • Oncology OnTrak: www.priorityconsult.com • NurseNav Oncology: www.nursenav.com • Navigation Tracker: www.navigationtracker.com • Medical Concierge Navigator: www.healthcareoss. com/mc • OncoNav: www.onco-nav.com. After fielding questions and comments from her navigator colleagues in the audience, Ms Brown expressed her appreciation for the lung cancer screening efforts represented by the group, “This is really exciting! There are so many people doing [lung cancer screening] programs now! When I first listened to Pam Madden talk about lung screening in 2010, there was one other person in the room with a program. This is great!” g

References

1. The National Lung Screening Trial Research Team. Results of initial lowdose computed tomographic screening for lung cancer. N Engl J Med. 2013; 368(21):1980-1991. 2. US Preventive Services Task Force. Screening for Lung Cancer. December 2013. http://www.uspreventiveservicestaskforce.org/uspstf13/lungcan/lungcan fact.pdf. Accessed March 24, 2014. 3. National Comprehensive Cancer Network, NCCN guidelines version 1. 2012 lung cancer screening. www.NCCN.org. Accessed March 25, 2014.

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