Navigating the Cancer Continuum - in the Context of Value-Based Care Patient Navigation in Cancer Care 2.0 - Pfizer for Professionals

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Patient Navigation in Cancer Care 2.0
Guiding patients to quality outcomes

Navigating the
Cancer Continuum
in the Context of Value-Based Care

          I. Introduction                                             3

          II. Past, Present, and Future of Navigation                 5

          III. Defining Navigation                                    9

          IV. Navigation Core Competencies                           11

          V. Navigator Role Delineation                              13

          VI. Models of Navigation                                   15

          VII. Barriers to Care                                      19

          VIII. Distress and Psychosocial Needs                      23

          IX. Health Literacy                                        29

          X. The Chronic Care Model and Cancer Care Continuum        31

          XI. Community Outreach and Prevention                      33

          XII. Navigation Program Development                        45

          XIII. Navigation Program Monitoring and Outcome Measures   49

          XIV. Metrics                                               51

          XV. Professional Development                               55

          XVI. Navigation Topics for Professional Development        59

          XVII. Conclusion                                           63

          XVIII. Navigation Resources                                65
I. Introduction

   Since the development of the 2014 Pfizer Evolu-    resources to decrease costs across oncology pa-
tion of Navigation slide deck, the healthcare envi-   tient populations and healthcare settings.
ronment—including oncology—has changed and               Navigation, with its various models, has had to
continues to evolve. With the rising incidence of     evolve beyond identifying barriers to incorporate
cancer, an aging population, and advances in          core competencies, certification, and standard-
the technology of treatment modalities, the cost      ized metrics to help drive continuous quality im-
of cancer is burdensome on both patients and          provement and value while identifying evi-
society. The focus of healthcare is shifting to a     dence-based best practices that elevate cancer
landscape of value-based care, with health out-       care to a grander scale. Value-based care is the
comes achieved per dollars spent.                     future of cancer management, and the compe-
   Value-based care is the concept of improving       tencies of navigation help ensure consistent deliv-
quality and outcomes for patients by standardizing    ery of optimized patient care across the care
healthcare processes through best practices.1         continuum and align and support this goal.
Navigation is integral to meeting these goals by
facilitating effective interprofessional collabora-   Reference
                                                      1. Cleveland Clinic website. Value-Based Care. https://my.cleve
tion and promoting patient satisfaction and care
quality, as well as the efficient use of healthcare   August 14, 2018.

                                                                                                                      Future of Navigation
                                                                                                                      II. Past, Present, and
Past Initiatives in                  reach and the elimination of bar-      management and patient navi-
Navigation                           riers to care. To that end, he         gation/care coordination, with
   Dr. Harold Freeman con-           offered free or low-cost breast        the goal of identifying and re-
ceived and initiated the na-         examinations and mammograms            ducing barriers to care (Table 1).2
tion’s first patient navigation      coupled with one-on-one navi-          With this evolution, the process
program in 1990. This followed       gation services. As a result, 5-year   of a multidisciplinary team ap-
just over 2 decades of observa-      survival rates increased among         proach, which centered on open
tion of more than 606 patients       this population, from 39% before       communication, was developed
with breast cancer treated at        intervention to 70% following the      to address the psychosocial
Harlem Hospital Center; of these     initiation of his patient navigation   distresses and financial concerns
patients, 94% were African Amer-     program. Dr. Freeman was able          of patients, as well as coordi-
ican. This population of dispro-     to demonstrate that 5-year can-        nate care needs. The process
portionately poor and uninsured      cer survival rates can be im-          of navigation cultivated the
patients had a high incidence        proved with increased access to        bidimensional care concept—
of breast cancer mortality and       screening and patient naviga-          patient-centered, to ensure con-
often presented with more ad-        tion programs by addressing and        tinuity of care; and health sys-
vanced stages of disease com-        working to eliminate issues pre-       tem–oriented, to empower pa-
pared with patients living out-      sented by lack of health insur-        tients and their families—as
side of this community.1             ance, fear and distrust of the         oncology care moved to a pre-
   Dr. Freeman’s program fo-         medical community, and cultur-         dominantly outpatient setting.3
cused on the window of oppor-        al and communication barriers.1            The navigation model cur-
tunity that was critical to saving   The scope of navigation, includ-       rently in use was developed fol-
patients from cancer mortality,      ing nurse and patient navigation,      lowing several organizational
by eliminating barriers to timely    has evolved from the Harold P.         and government reports and
care that were typically en-         Freeman Patient Navigation             initiatives focused on decreas-
countered between the point          Model of community outreach            ing healthcare disparities, elimi-
of a suspicious finding and the      and prevention and can now             nating barriers to care, and im-
resolution of that finding by fur-   span the entire continuum of           proving the overall patient
ther diagnosis and treatment.        care for oncology patients.1           experience. One such report,
For example, he observed de-             Although Dr. Freeman brought       the American Cancer Society’s
lays in follow-up care after ab-     the patient navigation move-           1989 Report to the Nation: Can-
normal findings or cancer diag-      ment to the forefront of health-       cer in the Poor, identified the 5
noses, and therefore proposed        care delivery in the 1990s, the        most critical issues related to
that patient navigators from the     nursing profession had its own         cancer among the poor.4 The
community could help address         movement that had been evolv-          report identified the critical is-
and bridge the gaps and barri-       ing since the 1970s. The goal          sues as: (1) poor people endure
ers that were prevalent between      driving the development of the         greater pain and suffering from
this patient population and the      utilization review movement in         cancer compared with other
healthcare system. One of the        nursing included monitoring the        Americans, (2) poor people and
major goals of what became           use and delivery of services in the    their families must make person-
known as the Freeman Model           1970s, which evolved into eval-        al sacrifices to obtain and pay
was to expand access to cancer       uating the appropriateness of          for care, (3) poor people face
screenings and clinical follow-up    medical care—including its need        obstacles in obtaining and using
among the medically under-           and efficiency—in the 1980s. The       health insurance and often do
served through community out-        1990s brought the focus to case        not seek care if unable to pay

       TABLE 1. Overview of the Evolution of Patient Navigation
       Time Frame                                                                    Relationship with
       and Focus                    Role                                             Other Providers              Setting            Methodology
       1970s: Utilization           Monitor use and delivery                         Adversarial                  Inpatient          Retrospective chart
       review                       of services                                                                                      review
       1980s: Utilization           Evaluate appropriateness,                        Adversarial                  Inpatient          Concurrent chart
       management                   medical need, and efficiency                                                                     review
       1990s: Case                  Assess, plan, implement,                         Collaborative                Involved in        Hands-on care
       management                   coordinate, monitor, and evaluate                                             patient care
       1990s: Patient               Identify and reduce barriers                     Collaborative                Underserved Community outreach
       navigation                   to access to care, diagnosis,                                                 patients
                                    and prescription
       2000-Present:                Identify and reduce barriers                     Clinical                     Across the         Hands-on care and
       Patient navigation           to access to care, diagnosis,                    Collaborative                continuum          coordination of care
                                    and prescription                                                              of care
       Source: Shockney L. Evolution of patient navigation. Clin J Oncol Nurs. 2010;14:405-407. Reprinted with permission. Copyright 2010 by Oncology Nursing
       Society. All rights reserved.

      for it, (4) cancer education pro-                      (Standard 3.1), which became                           of tobacco use, alcohol/sub-
      grams are culturally insensitive                       effective in 2016, requires that                       stance abuse, and/or mental
      and irrelevant to many poor                            cancer programs seeking CoC                            illness).8 The CNA should list re-
      people, and (5) fatalistic ideas                       accreditation establish a pro-                         sources available within the
      about cancer are prevalent                             cess to identify and navigate                          community, as well as point out
      among the poor and prevent                             potential barriers to care, and                        disparities and gaps in resourc-
      them from seeking care.4 Addi-                         document that process each                             es.7,8 Taking these steps allows
      tional reports and initiatives fo-                     calendar year.7,8 The process                          the program to identify priorities
      cused on addressing barriers to                        must be driven by a community                          aimed at addressing barriers to
      care include the US National                           needs assessment (CNA) that is                         care and implement programs,
      Cancer Institute’s report, Voices                      conducted at least once every                          services, and/or partnerships to
      of a Broken System: Real Peo-                          3 years.7,8 The CNA systematical-                      overcome them, thereby im-
      ple, Real Problems, which indi-                        ly evaluates processes currently                       proving outcomes among the
      cated that barriers to cancer                          in place within the facility and                       target population.8 To stream-
      care exist for people of all socio-                    gathers information to identify                        line this process and decide on
      economic levels5; and the Pa-                          the community being served, as                         a plan to overcome barriers,
      tient Navigator Outreach and                           well as any barriers to care that                      needs related to patients’ ac-
      Chronic Disease Prevention Act                         may exist within that communi-                         cess, education, treatment,
      of 2005, which ensured that                            ty.7,8 Relevant data collection                        monitoring, psychological sup-
      navigators are accessible to all                       can include geographic loca-                           port, and the overall patient
      patients with cancer, to provide                       tions served (urban, suburban,                         navigation process would be
      high-quality, coordinated care.6                       rural); socioeconomic charac-                          considered (Figure 1).7,8
                                                             teristics of the sample popula-
      Present Initiatives in                                 tion (eg, median household in-                         Alternative Payment
      Navigation                                             come, housing status, average                          Models and the
         In 2012, the American College                       education level, immigration                           Future of Navigation
      of Surgeons Commission on Can-                         status, employment status, avail-                         The complex healthcare
      cer (CoC) released standards                           ability of public transportation);                     landscape (including its pay-
      that reflected the goal of ensur-                      race/ethnicity; median age; and                        ment system) has evolved over
      ing patient-centered care.7 One                        behavioral and psychosocial                            the past 4 decades and will
      of the more recent standards                           health characteristics (eg, rates                      continue to evolve in the future.

FIGURE 1. Requirements of a Community Needs Assessment (CNA)
                                                                                                   incentives, including perfor-
  The CNA Must Define/Identify:                                                                    mance-based payments, to im-
     The cancer program’s community and local population(s)                                        prove care coordination, ap-
         Description of facility, number of patients with cancer served, range                    propriateness of care, and
          of cancer-related clinical services, prevention and detection programs                   access for beneficiaries under-
     Health disparities (numerous factors can contribute to disparities in                         going chemotherapy.11,13 It tar-
     cancer incidence and death rates, such as race, ethnicity, gender, under-                     gets oncology practices deliv-
     served groups, and socioeconomic status)
                                                                                                   ering chemotherapy treatment
          Use local, state, and national resources to compile data
          Compare cancer program data with national and regional data                              and the spectrum of care pro-
     Barriers to care, which may include patient-centered, provider-centered,                      vided to a patient during a
     or health system–centered barriers                                                            6-month episode following the
     Resources available to overcome barriers on-site or by formal referral                        start of chemotherapy.13 The
         Perform internal and external resource mapping to examine                                OCM is meant to shift reimburse-
          existing resources                                                                       ment and payment to val-
     Gaps in the availability of resources to overcome barriers                                    ue-based quality care, which
         Create an action plan with SMART goals to address gaps                                    includes patient navigation as a
  SMART indicates specific, measurable, achievable, realistic, and timely.                         foremost component.13 The
  Sources: Commission on Cancer (CoC). Cancer Program Standards: Ensuring Patient-Centered Care.   Merit-Based Incentive Payment
  2016 ed. Chicago, IL: American College of Surgeons.
  standards. Accessed June 13, 2018; and The George Washington University Cancer Center.
                                                                                                   System (MIPS) is another pay-
  Implementing the Commission on Cancer Standard 3.1 Patient Navigation Process: A Road Map for    ment mechanism instituted by
  Comprehensive Cancer Control Professionals and Cancer Program Administrators. Washington, DC:    the Centers for Medicare &
  September 2017.
                                                                                                   Medicaid Services that will pro-
                                                                                                   vide annual updates to physi-
In today’s healthcare environ-                          patient populations and health-            cians starting in 2018, based on
ment, key organizations drive                           care settings.                             performance in 4 categories:
the focus on quality, outcomes,                            The Center for Medicare &               quality, resource use/cost, clini-
and evidence-based practice.                            Medicaid Innovation (the Inno-             cal practice improvement ac-
The Institute for Healthcare Im-                        vation Center) is developing               tivities, and advancing care in-
provement Triple Aim Initiative                         new alternative payment and                formation.14 Using a composite
seeks to improve the patient                            delivery models aimed at im-               performance score, eligible pro-
experience of care (including                           proving the effectiveness and              fessionals may receive a pay-
quality and satisfaction), im-                          efficiency of specialty care.11            ment bonus, a payment penal-
prove the health of populations,                        An alternative payment model               ty, or no payment adjustment.
and reduce the per capita cost                          (APM) is a payment approach                The importance of care coordi-
of healthcare.9 Value-based                             that gives added incentive pay-            nation is highlighted under the
cancer care is a highly coordi-                         ments for the provision of high-           MIPS improvement activities.
nated, patient-centered solu-                           quality and cost-efficient care.               The premise of value-based
tion to address rising healthcare                       APMs can apply to a specific               care is that better coordinated
costs, ineffective duplication of                       clinical condition, a care epi-            and connected patient care
services, and barriers to care.10                       sode, or a population.12 Among             will improve outcomes and
Navigation is integral to meet-                         specialty models is the Oncolo-            lower costs. Navigators play a
ing these goals by facilitating                         gy Care Model (OCM) launched               critical role in the coordination
effective interprofessional col-                        in July 2016, which aims to pro-           of care and patient empower-
laboration and promoting pa-                            vide higher quality, better coor-          ment through education, pa-
tient satisfaction and care qual-                       dinated oncology care at the               tient-reported outcomes, and
ity, as well as the efficient use of                    same or lower cost as Medi-                emotional support. Patients who
healthcare resources to de-                             care.11,13 The OCM is a 5-year             have access to “easy to under-
crease costs across oncology                            model that combines financial              stand” information, education,

      and self-care instructions are                   fessional navigation framework: elabo-        fessionals and Cancer Program Adminis-
                                                       ration and validation in a Canadian           trators. Washington, DC: September 2017.
      better prepared to adhere to                     context. Oncol Nurs Forum. 2012;39(1):        9. Institute for Healthcare Improvement.
      treatment, manage side ef-                       E58-E69.                                      IHI Triple Aim Initiative.
                                                       4. American Cancer Society (ACS). A           gage/initiatives/TripleAim/Pages/de
      fects, and, ultimately, have the                 summary of the American Cancer Society        fault.aspx. Accessed June 11, 2018.
      potential for achieving better                   Report to the Nation: cancer in the poor.     10. Strusowski T. Navigation metrics and
                                                       CA Cancer J Clin. 1989;39(5):263-265.         value-based care.
      outcomes. Navigators serve pa-                   5. National Institutes of Health (NIH). Na-   expert-commentary/navigation-101/867-
      tients by acting as direct                       tional Cancer Institute. Voices of a Bro-     navigation-metrics-and-value-based-
                                                       ken System: Real People, Real Problems.       care. Accessed June 13, 2018.
      contacts to whom patients may                    President’s Cancer Panel Report of the        11. Centers for Medicare & Medicaid
                                                       Chairman, 2000-2001. Bethesda, MD.            Services (CMS). Oncology Care Model.
      report symptoms as they arise,                   6. H.R. 1812, 109th Congress of the Unit-
      as opposed to allowing the                       ed States (2005-2006). Patient Navigator      Oncology-Care/. Accessed June 11, 2018.
                                                       Outreach and Chronic Disease Preven-          12. Centers for Medicare & Medicaid
      consequences of underreport-                     tion Act of 2005.           Services (CMS). APMs overview. https://
      ing symptoms to escalate in se-                  bill/109th-congress/house-bill/1812/text/ Accessed
                                                       pl. Accessed June 16, 2018.                   June 11, 2018.
      verity, potentially leading to                   7. Commission on Cancer (CoC). Can-           13. Centers for Medicare & Medicaid
      hospitalization.                                 cer Program Standards: Ensuring Pa-           Services (CMS). Oncology care model
                                                       tient-Centered Care. 2016 ed. Chicago,        [press release]. Baltimore, MD: CMS;
                                                       IL: American College of Surgeons. www.        June 29, 2016.
      References                                      MediaReleaseDatabase/Fact-sheets/
      1. Freeman H, Rodriguez RL. History and          standards. Accessed June 13, 2018.            2016-Fact-sheets-items/2016-06-29.html.
      principles of patient navigation. Cancer.        8. The George Washington University           Accessed June 16, 2018.
      2011;117:3539-3542.                              Cancer Center. Implementing the               14. Centers for Medicare & Medicaid
      2. Shockney L. Evolution of patient navi-        Commission on Cancer Standard 3.1             Services (CMS). MIPs overview. https://
      gation. Clin J Oncol Nurs. 2010;14:405-407.      Patient Navigation Process: A Road Map Accessed
      3. Fillion L, Cook S, Veillette A, et al. Pro-   for Comprehensive Cancer Control Pro-         June 11, 2018.

   The importance of naviga-        families, and caregivers to assist   ation of Oncology Social Work,
tion and the roles of nurse and     in overcoming barriers to re-        and the National Association of

                                                                                                                            III. Defining Navigation
patient navigators have been        ceiving care and facilitating        Social Workers developed a
recognized by various organiza-     timely access to clinical services   joint position on navigation. The
tions, such as the Commission       and resources. Navigation pro-       position adapted an earlier defi-
on Cancer (CoC), the Ameri-         cesses encompass prediagnosis        nition of patient navigation in
can Cancer Society, the Acad-       through all phases of the cancer     the cancer care setting from
emy of Oncology Nurse & Pa-         experience. The navigation ser-      C-Change, modifying it slightly
tient Navigators (AONN+), and       vices implemented will depend        to consist of “[i]ndividualized as-
the Oncology Nursing Society        upon the particular type, severi-    sistance offered to patients,
(ONS). Although these organiza-     ty, and/or complexity of the         families, and caregivers to help
tions sometimes use overlap-        identified barriers.”1 AONN+ de-     overcome healthcare system
ping terminology, they have         fines the navigation process as      barriers and facilitate timely ac-
                                                                         cess to quality health and psy-
                                                                         chosocial care from prediagno-
   Navigation is the process of “[h]elping patients                      sis through all phases of the
      overcome healthcare system barriers and                            cancer experience.”3
   providing them with the timely access to quality
     medical and psychosocial care from before                           1. Commission on Cancer (CoC). Can-
                                                                         cer Program Standards: Ensuring Pa-
     cancer diagnosis through all phases of their                        tient-Centered Care. 2016 ed. Chicago,
                                                                         IL: American College of Surgeons. www.
                 cancer experience.”2                          
                                                                         standards. Accessed March 26, 2018.
                                                                         2. Academy of Oncology Nurse & Pa-
                                                                         tient Navigators (AONN+). Helpful def-
nonetheless each been signifi-      “[h]elping patients overcome         initions.
                                                                         helpful-definitions. Accessed June 13, 2018.
cant in developing guidance,        healthcare system barriers and       3. Oncology Nursing Society (ONS), Asso-
competencies, and standards         providing them with timely ac-       ciation of Oncology Social Work (AOSW),
                                                                         National Association of Social Workers
for the profession of navigation.   cess to quality medical and psy-     (NASW). Oncology Nursing Society, the
                                                                         Association of Oncology Social Work,
According to the CoC, “[p]a-        chosocial care from before           and the National Association of Social
tient navigation in cancer care     cancer diagnosis through all         Workers joint position on the role of on-
                                                                         cology nursing and oncology social
refers to specialized assistance    phases of their cancer experi-       work in patient navigation. Oncol Nurs
for the community, patients,        ence.”2 In 2010, ONS, the Associ-    Forum. 2010;37(3):251-252.

    Navigators serve in many roles     recognized domains of compe-            the development of an evi-
as educators, care facilitators,       tency recommended by the                dence-based or promising/best
counselors, and patient advo-          NNRT for patient navigation:            practice patient-centered plan
cates by providing education                                                   of care, which is inclusive of the
and psychosocial support, coor-        I. Domain: Ethical,                     patient’s personal assessment as
dinating care across the continu-      Cultural, Legal, and                    well as healthcare provider sys-
um of care and its disciplines,        Professional Issues                     tem and community resources.
and assisting with financial needs.       Competency: Demonstrates             The navigator acts as a liaison
Navigators must demonstrate            sensitivity and responsiveness to       among all team members to ad-

                                                                                                                          IV. Navigation Core
competence in oncology, as             a diverse patient population,           vocate for patients to optimize

well as the psychosocial and spir-     including but not limited to: re-       health and wellness with the over-
itual aspects of care for patients     specting confidentiality; organi-       all focus of improving access to
and families. Based on the needs       zational rules and regulations;         services for all patients. Naviga-
of the community and the navi-         ethical principles; and diversity       tors conduct patient assessments
gation program, elements of the        in gender, age, culture, race,          (needs, goals, self-management,
skill set should include knowledge     ethnicity, religion, abilities, sexu-   behaviors, strategies for improve-
in health promotion; past work or      al orientation, and geography.          ment) integrating patients’ per-
personal experience within the                                                 sonal and cultural values.
healthcare field; language skills      II. Domain: Patient/Client
to effectively communicate with        and Care Team Interaction               V. Domain: Practice-
the populations served; and ca-           Competency: Applies insight          Based Learning
pability in forming relationships,     and understanding concerning                Competency: Optimizes navi-
working well on a team, prob-          human emotional responses to            gator practice through continual
lem-solving, and demonstrating         create and maintain positive            professional development and
leadership when required.              interpersonal interactions lead-        the assimilation of scientific evi-
    The recently created National      ing to trust and collaboration          dence to continuously improve
Navigation Roundtable (NNRT),          between patient/family/care-            patient care, based on individual
sponsored by the American Can-         givers and the healthcare team.         navigator gaps in knowledge,
cer Society, is a national coalition   Patient safety and satisfaction         skills, attitudes, and abilities.
of more than 40 member organi-         are priorities.
zations and individuals who are                                                VI. Domain: Systems-
dedicated to achieving health          III. Domain: Health                     Based Practice
equity and access to care across       Knowledge                                  Competency: Advocates for
the cancer continuum. Its goal is        Competency: Demonstrates              quality patient care by acknowl-
to advance navigation efforts          breadth of knowledge about              edging and monitoring needed
that eliminate barriers to cancer      health, the cancer continuum,           (desirable) improvements in sys-
care, reduce disparities in health     psychosocial and spiritual as-          tems of care for patients, from
outcomes, and foster ongoing           pects, and attitudes and be-            enhancing community relation-
health equity.1 The NNRT website       haviors specific to their patient       ships and outreach through end-
(         navigation (clinical/licensed or        of-life care. This includes en-
will have updates and additions        nonmedical licensure) role.             hancing community relationships
to the national work being done                                                and developing skills and knowl-
around training and education          IV. Domain: Patient                     edge to monitor and evaluate
(competencies) for navigation.2        Care Coordination                       patient care and the effective-
The following are the 7 nationally        Competency: Participates in          ness of the program.

       VII. Domain:                        barriers, solutions, and re-      References
                                                                             1. Patient Navigator Training Collaborative.
       Communication/                      sources. Resolution of conflict   Colorado patient navigation leaders help
       Interpersonal Skills                among patients, family mem-       launch National Navigation Roundtable.
          Competency: Promotes ef-         bers, community partners, and     ado-leaders-help-launch-national-naviga
       fective communication and in-       members of the oncology care      tion-roundtable. Accessed June 13, 2018.
                                                                             2. American Cancer Society National
       teractions with patients in         team is demonstrated in profes-   Navigation Roundtable Training & Certifi-
                                                                             cation Working Group. Navigator Core
       shared decision-making based        sional and culturally accept-     Competencies. 2018. www.navigation
       on their needs, goals, strengths,   able behaviors.         

   Clinically licensed navigators    issues that may confront pa-          type of evaluation based on
(ie, community health workers        tients with cancer. Working at        their scopes of practice and li-
[CHWs], patient navigators, nurse    the top of their licensure, a nurse   censure. During the course of
navigators, and social work navi-    navigator or social work naviga-      their work, CHWs focus their
gators) are 3 professional types     tor should have knowledge of          evaluation on the community’s
of navigation specialists with       the clinical impacts of cancer        needs and health behaviors.
overlapping yet distinct roles/re-   on patients, caregivers, and          Patient navigators straddle the
sponsibilities and competencies      families, as well as the skills       boundary between the com-
based on licensure. All 3 profes-    needed to intervene on their          munity and the healthcare set-
sional types of navigation are       behalf (eg, assess functional         ting by evaluating barriers to
involved with individual or pa-      and psychosocial health and           care and health disparities with-
tient education, but the types of    manage symptoms).1                    in the community against quali-
information provided can vary            Regardless of the navigator       ty indicators of the healthcare
based on training or education       title, these 3 professional types     system. For clinically licensed
and professional level. Although     must have a solid knowledge           navigators, such as the nurse
CHWs should have general             base and the expertise needed         navigator or social work naviga-

                                                                                                                             V. Navigator Role
knowledge on health issues           to perform job-related duties         tor within the healthcare sys-
such as cancer and chronic           and tasks, including understand-      tem, the focus of evaluation
diseases, the oncology patient       ing one’s scope of practice,          should be clinical outcomes
navigator should have knowl-         supporting evaluation efforts,        and quality indicators.1
edge of cancer screening             and identifying and exercising
guidelines, diagnostic process-      self-care strategies.1 Although       Reference
                                                                           1. Willis A, Reed E, Pratt-Chapman M, et
es, treatment options, and survi-    these professional types share        al. Development of a framework for pa-
                                                                           tient navigation: delineating roles across
vorship, as well as related physi-   the similarity of supporting eval-    navigator types. J Oncol Navig Surviv.
cal, psychological, and social       uation efforts, they differ in the    2013;4:20-26.

   Various models of navigation                          There are also hybrid models                      key. Community is the popu-
have evolved from Freeman’s                          of navigation in which programs                       lation as a whole, including
Patient Navigation Model, utiliz-                    can implement one type of                             the medically underserved, low-
ing community members known                          model or a combination of the                         income, or minority subpopula-
as lay navigators. Navigators                        various models of navigation to                       tions within the geographic area
who assist patients may come                         achieve the goal of eliminating                       served by the healthcare facility.
from oncology programs, as                           barriers to care and enabling                         The CNA helps identify the rele-
well as from within the commu-                       patients to move seamlessly                           vant healthcare disparities and
nity itself. Current models of                       across the care continuum. Insti-                     barriers to care that exist within a
navigation include clinical nurse                    tutions/oncology programs are                         community so that a plan can
navigators (also known as on-                        able to develop and implement                         be developed to meet these
cology nurse navigators), social                     a useful navigation program                           challenges. The specific require-
workers, patient navigators (also                    based on their type of naviga-                        ments of the target population
referred to as nonclinically li-                     tion model and the specific                           will dictate the greatest service
censed navigators), community                        needs and goals of the pro-                           needs, and the skill set and
healthcare workers as volun-                         gram, as well as address the                          model of navigation should align
teers or advocacy/organiza-                          needs of the community served.                        with these. For example, rural
tional employees, and financial                          To effectively formulate the                      populations may find that the
navigators specializing in finan-                    navigation process for a particu-                     greatest service need is transpor-
cial issues that impact care                         lar cancer program, the commu-                        tation to and from appointments,
(Figure 1).1,2                                       nity needs assessment (CNA) is                        for which the navigator will focus

                                                                                                                                                        VI. Models of
FIGURE 1. Navigation Models

                         Nurse Navigator                                                                Patient or Nonclinically Licensed
                     A professional registered nurse with                                               Navigator/ACS Patient Resource
                     oncology-specific knowledge. Using                                                 Navigator
                     the nursing process, the nurse                                               With a basic understanding of
                     navigator provides education and                                             cancer, healthcare systems, and
                     resources to facilitate informed                                             how patients access care and
                     decision-making and timely access                                            services across the cancer
  to quality health and psychosocial care throughout all                      continuum, they connect patients to information,
  phases of the cancer continuum                                              resources, and support

                         Social Work Navigator
                         Social worker with oncology-specific
                         clinical knowledge, who offers
                         individualized assistance to patients,                                            Community Healthcare Workers
                         families, and caregivers to help                                                  Financial Navigators
                         overcome healthcare system barriers
                         and psychosocial assessment and                                                   Volunteer Navigator

 Source : Adapted from Bellomo C. Navigating the Cancer Continuum: Best Practices in Navigation. Presented at: Western Colorado Oncology Nursing
 Conference; October 21, 2017; Grand Junction, CO.

       on finding vouchers or resources             revalence of health
                                                   P                                  Goals of Navigation
       to provide low-cost transporta-             conditions                              Navigators may assist patients,
       tion. In addition, immigrant com-           Insurance                          their families, and caregivers in
       munities benefit from navigators            Environmental factors              rural or urban communities or
       who offer services in their lan-            Causes of death                    academic settings. Clinical nurse
       guage and possess a keen un-             Sources of data                       navigators may function as a
       derstanding of relevant cultural              Cancer registry                  tumor-specific navigator (eg,
       issues. Navigation programs can               Organization’s marketing        breast, thoracic, hematologic)
       be focused on the nonclinical or               department                      or as a multisite/general naviga-
       lay navigator’s perspective, with              US Census Bureau                tor. No matter the setting or dis-
       the navigator performing non-                  Centers for Disease            ease type, navigators share the
       clinical tasks that include sched-              Control and Prevention         same roles, responsibilities, com-
       uling, interpreter services, and                State department of           petencies, and goals within their
       identifying and/or addressing fi-                health                        scope of practice. Their focus is
       nancial needs. Other navigation                  Centers for Medicare &       to offer individualized assistance
       programs may focus on the clini-                  Medicaid Services            to the patient and family, reduce
       cal nurse navigator, who has                      American Cancer Society’s   barriers, and increase access to
       oncology-specific knowledge to                     Cancer Facts & Figures      medical and psychosocial care
       provide education and resourc-                     reports.                    across the entire continuum.
       es to facilitate informed deci-      Step 3:                                        Within the multidisciplinary
       sion-making; is able to address       	Administer surveys                     team, the navigator works as an
       symptom management and                      Patient, families, and            advocate, care provider, edu-
       clinical aspects of care; and can            caregivers                        cator, counselor, and facilitator
       provide psychosocial care.                   Healthcare professionals         to ensure that every patient re-
       Based on the needs of the com-                Key stakeholders.                ceives comprehensive, timely,
       munity served, navigation pro-       Step 4:                                   and quality healthcare ser-
       grams may incorporate social          	Collect and analyze all data.          vices.3 The goals of navigation
       workers to assist with logistical    Step 5:                                   can be described by 5 catego-
       needs, as well as provide psy-        	Community Health Needs                 ries (Figure 2)1,4:
       chosocial care and support.              Assessment written report               	Coordination of care –
                                             	Report findings to cancer                  Coordination of care
       How to Conduct a CNA3                    committee                                  involves ensuring timely
       Step 1:                               	Discuss findings                            access to support services,
        	Establish a work group             	Formulate patient navigation                appointments, tests, and
          responsible for conducting            process and discuss the                    procedures
          and reporting the CNA                 process with the cancer                 	Education of patients –
             Multidisciplinary team            committee.                                 Navigators provide patient-
              approach                      Step 6:                                        centered education to
              Create a timeline of          	SWOT analysis                               patients, families, and
               activities.                   	Develop strategic                          caregivers on the cancer
       Step 2:                                  implementation on how the                  diagnosis; treatment; side
        	Collect and review data               organization plans to                      effects and management;
          of the community                      prioritize needs that were                 and clinical trials, to ensure
               Demographic data of             identified in the assessment.              that they are informed and
                primary service area                                                       involved in the shared
                Population trends             See Appendix for Sample                      decision-making process
                Poverty rates               Work Plan for Community Needs               	Providing psychosocial
                Educational attainment      Assessment.                                    support – Facilitating the
VI. MODELS OF NAVIGATION                17

FIGURE 2. The Goals of Oncology Navigation

                                                          COORDINATE CARE
                                                          Timely access to care
                                                          and support service,
                                                         appointment, referrals,
                                                          test, procedures, and
                                                             other consults

                  Serve as the patient                                                                 Treatment
                  advocate to ensure                                                                   Management of side
                  their voice is heard                                                                 effects
                                                                                                       Clinical trials
                                                                                                       Shared decision-making

                                  Barriers to care
                                  Resources for patients                             PROVIDE
                                  and caregivers                                     Psychosocial support
                                  Patients’ life goals                               to patient and family
                                  and incorporate
                                  into treatment plan

  Source : Adapted from Strusowski T. Navigation and Survivorship 101. Presented at: Academy of Oncology Nurse & Patient Navigators (AONN+) 6th Annual
  Navigation & Survivorship Conference; October 1-4, 2015; Atlanta, GA.

    development of coping skills,                       resources while ensuring as                       Presented at: Western Colorado Oncolo-
    and referral to psychosocial                        the patient’s advocate that                       gy Nursing Conference; October 21,
                                                                                                          2017; Grand Junction, CO.
    resources                                           their goals, preferences, and                     3. Johnston D. Evidence into Practice
 	Identification of barriers and                       voice are heard.                                  Subcommittee Meeting. Commission on
                                                                                                          Cancer Standard 3.1: Patient Navigation
    resources – Helping to                                                                                Process. Presented at: Academy of Oncol-
    improve access to needed                        References                                            ogy Nurse & Patient Navigators (AONN+)
                                                    1. Strusowski T. Navigation and Survivor-             6th Annual Navigation & Survivorship Con-
    patient resources                               ship 101. Presented at: Academy of                    ference; October 1-4, 2015; Atlanta, GA.
                                                    Oncology Nurse & Patient Navigators                   4. Strusowski T, Sein E, Johnston D, et al.
 	Advocating for patients –                       (AONN+) 6th Annual Navigation & Survi-                Standardized evidence-based oncolo-
    Identifying and overcoming                      vorship Conference; October 1-4, 2015;                gy navigation metrics for all models: a
                                                    Atlanta, GA.                                          powerful tool in assessing the value and
    barriers to care by providing                   2. Bellomo C. Navigating the Cancer                   impact of navigation programs. J Oncol
    individualized assistance/                      Continuum: Best Practices in Navigation.              Navig Surviv. 2017;8:220-237.

    To effectively coordinate care,   compared with other patient           navigators work closely with pa-
navigators must have an under-        populations. Such obstacles can       tients and families, they devel-
standing of health disparities (ie,   include financial barriers; com-      op a therapeutic and trusting
poverty, social injustice, or ra-     munication barriers; healthcare       relationship through open and
cial and ethnic biases) and           literacy and healthcare system        honest communication, there-
healthcare barriers (ie, cultural,    barriers; and fear and distrust.      by helping ensure that patients
socioeconomic, geographic,            Many patients, particularly the       and their families feel comfort-
and logistic) that patients may       underserved and uninsured,            able disclosing their specific
face. Although the term dispari-      face significant barriers to re-      needs and concerns related to
ty is often interpreted to mean       ceiving timely diagnosis and          care. Navigators should know
racial or ethnic inequalities, many   quality of care (Table 1).2           the proper questions to ask to
dimensions of disparity exist in
the United States, particularly in
healthcare. If a health outcome          A key function of the navigator is the provision
is seen in a greater or lesser ex-         of tailored, culturally appropriate education
tent between populations, there
is a disparity.
                                          to facilitate communication and collaboration
    In phase I of the US Depart-        based on findings of a learning needs assessment
ment of Health and Human Ser-
                                               conducted to establish the patient’s
vices’ public health objectives
referred to as Healthy People               current health literacy, preferred language,
2020, the term health disparity is                    motivation, and attitude.3
defined as “…a particular type
of health difference that is close-
ly linked with social or economic         Barriers may be related to the    elicit appropriate responses (eg,
disadvantage. Health disparities      patient, physician, or healthcare     “What would keep you from
adversely affect groups of peo-       system. Socioeconomic barri-          getting or undergoing care?”).
ple who have systematically           ers—including poverty, lack of        Navigators also conduct com-
experienced greater social or         health insurance, inadequate          prehensive assessments, such as

                                                                                                                         VII. Barriers to Care
economic obstacles to health          insurance/inability to pay out-of-    distress screenings, to elicit infor-
based on their racial or ethnic       pocket costs, poor education,         mation regarding physical, so-
group, religion, socioeconomic        and unemployment—can have             cial, emotional, cultural, and
status, gender, mental health,        the greatest impact on the exis-      spiritual needs. Based on the in-
cognitive, sensory, or physical       tence of health disparities. The      dividual needs and specific bar-
disability, sexual orientation,       core principle of navigation is       riers identified by the assess-
geographic location, or other         the elimination of barriers to        ments, navigators collaborate
characteristics historically linked   timely, quality care throughout       with other healthcare profes-
to discrimination or exclusion.”1     all phases of healthcare, includ-     sionals and members of the mul-
                                      ing prevention, detection, diag-      tidisciplinary team to develop a
Barriers                              nosis, treatment, and survivorship.   plan to address these issues.
   Barriers to healthcare are ob-         Increasingly, navigation pro-         Navigators must understand
stacles that prevent vulnerable       grams have been used as a             and practice cultural awareness
patient populations from getting      strategy to improve the timely        in recognizing how culture can
the care they need or that cause      receipt of needed healthcare          influence healthcare. A key
them to get inferior healthcare       services. During the time that        function of the navigator is the

        TABLE 1. Barriers to Care Addressed by Navigators

        Barriers                                                                                               Definition
        Patient Focused
        Co-morbidity            Disability                             Disability (physical or mental) that makes getting healthcare difficult
                                Co-morbidity                           Medical or mental health problems that make getting healthcare difficult
        Financial               Insurance                              Paying for direct aspects of healthcare is a problem
                                Financial problems                     Dealing with financial problems (not directly related to healthcare) is
                                                                       interfering with receiving healthcare (eg, not being able to pay food bills)
                                Housing                                Worrying about housing during healthcare
        Attitudinal             Attitudes toward providers             Perceptions and beliefs about the healthcare providers who impact
                                                                       receiving healthcare
                                Perceptions/beliefs about              Personal or cultural beliefs that affect receiving healthcare
                                test or treatment
                                Not a priority                         Other issues take priority over healthcare
                                Fear                                   Fear about any aspect of health or health-related care
        Other Focused
        Transportation          Transportation                         Difficulty getting from home to healthcare site
                                Out of town/country                    Out of area during healthcare
                                Location of facility                   Distance from healthcare facility even if transportation is available
        Interpersonal           Social support                         Lacks a person/community for assistance during healthcare
                                Child care                             Not having child care when needed during healthcare
                                Adult care                             Difficulty finding support for other family members during healthcare
                                Employment demands                     Work demands make getting healthcare difficult
        System                  Communication concerns                 Lacks understanding of the information provided by healthcare
                                with providers                         personnel
                                Literacy                               Difficulty understanding written communication from the healthcare
                                Language/interpreters                  Not sharing a common language for communication
                                System problems                        Care provided is not convenient/efficient to patient needs (eg, waiting
                                                                       too long on the phone or in the office, days and hours of operation)
        Source: Adapted from Katz ML, Young GS, Reiter PL, et al. Barriers reported among patients with breast and cervical abnormalities in the patient navigation
        research program: impact on timely care. Womens Health Issues. 2014;24(1):e155-e162.

       provision of tailored, culturally                      ventions to address barriers expe-                       preter assistance, referral to fi-
       appropriate education to facili-                       rienced by patients with cancer.                         nancial assistance programs
       tate communication and col-                            In an effort to remove barriers,                         (community, state, or national),
       laboration based on findings of                        navigators connect patients to                           advocating for appointments
       a learning needs assessment                            resources and support systems,                           with oncology specialists and
       conducted to establish the pa-                         assist in the healthcare provider                        members of the multidisciplinary
       tient’s current health literacy,                       interaction, and streamline ap-                          team, and connecting patients
       preferred language, motivation,                        pointments and paperwork. Nav-                           with available community and
       and attitude.3                                         igator interventions can include                         national support resources.
          Navigators must be compe-                           arranging for logistical support                            Resources that connect pa-
       tent in addressing, developing,                        (such as transportation, lodging,                        tients with available community
       and implementing plans/inter-                          or child care), language inter-                          and national services include

CancerCare® and Advocacy            connect with relevant cancer               Healthy People 2020. Section IV: Advisory
                                                                               Committee findings and recommenda-
Connector. CancerCare® (www.        advocacy group resources. (See             tions. Washington, DC: HHS; October 28,         Navigation Resources section for           2008.
                                                                               fault/files/PhaseI_0.pdf. Accessed June
is a searchable, online database    more information.)                         13, 2018.
                                                                               2. Katz ML, Young GS, Reiter PL, et al.
of financial and practical assis-                                              Barriers reported among patients with
tance available for people with     References                                 breast and cervical abnormalities in the
                                    1. US Department of Health and Human       patient navigation research program:
cancer. Advocacy Connector          Services (HHS), The Secretary’s Advisory   impact on timely care. Womens Health
(https://advocacyconnector.         Committee on National Health Promo-        Issues. 2014;24(1):e155-e162.
                                    tion and Disease Prevention Objectives     3. McDonald C. A first-hand look at the
com) is a resource designed to      for 2020. Phase I Report: Recommenda-      role of the breast cancer nurse naviga-
help patients and caregivers        tions for the Framework and Format of      tor. Care Manag. 2011;17:11-13, 27-28.
VIII. DISTRESS AND PSYCHOSOCIAL NEEDS                           23

    The cancer experience can         FIGURE 1. Periods of Increased Vulnerability for Distress
have a life-changing impact on
                                           Finding a suspicious symptom                   Medical follow-up and surveillance
individuals, including the need
to accept loss, a perceived lack           During diagnostic workup                       Treatment failure
of control in some situations, and         Awaiting treatment                             Recurrence/progression
fear of recurrence.1 Psychologi-           Changing treatment modality                    Advanced cancer
cal problems created or exacer-
                                           End of treatment                               End of life
bated by the diagnosis of cancer
can include depression, anxiety,           Discharge from hospital
stress, and other emotional is-         Source : Adapted with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN
                                        Guidelines®) for Distress Management V.2.2018. © 2018 National Comprehensive Cancer Network,
sues, which can be compound-            Inc. All rights reserved. The NCCN Guidelines® and illustrations herein may not be reproduced in
ed by psychosocial aspects such         any form for any purpose without the express written permission of NCCN. To view the most recent
                                        and complete version of the NCCN Guidelines, go online to The NCCN Guidelines are a
as a lack of information or skills      work in progress that may be refined as often as new significant data becomes available.
needed to manage the illness; a
lack of transportation or sup-
portive services; financial pres-     abling, such as depression, anx-                     treatment modality, end of treat-
sures; and disruptions in work,       iety, panic, social isolation, and                   ment, discharge from the hospi-
school, and family life. Distress     existential and spiritual crisis.”2                  tal following treatment, medical
encompasses the emotional,                To deliver high-quality cancer                   follow-up and surveillance, treat-
physical, and psychological as-       care, the Commission on Cancer                       ment failure, recurrence/pro-
pects of facing a cancer diag-        (CoC) Standard 3.2 incorporates                      gression, advanced cancer, and
nosis and its treatment. Patients,    distress screening into routine                      end of life (Figure 1).2 In addition,
families, and treatment teams         cancer care. The CoC recom-                          documentation of each pa-
should be informed that man-          mends that all patients with can-                    tient’s screening process and as-
agement of distress is an inte-       cer be screened for distress a                       sociated findings is encouraged,
gral part of total medical care       minimum of 1 time during a piv-                      to properly assess psychosocial
and includes appropriate infor-       otal medical visit such as post-                     needs so that they may be ad-
mation about psychosocial ser-        surgical visits, the initial discussion              dressed through tools, resources,
vices in the treatment center         of chemotherapy with a medi-                         and support services designed
and the community.1,2 The Na-         cal oncologist, at a routine visit                   to improve patient outcomes.2,3
tional Comprehensive Cancer           with a radiation oncologist, or at                       A failure to acknowledge and
Network® (NCCN®) defines dis-         a postchemotherapy follow-up                         measure distress stemming from
tress as “…a multifactorial un-       visit. Pivotal medical visits that                   clinical depression in patients
pleasant emotional experience         confer the greatest risk for dis-                    can cause impaired functioning
of a psychological (ie, cognitive,    tress could be given preference,                     and decreased adherence to
                                                                                                                                                Psychosocial Needs
behavioral, emotional), social,       such as at the time of diagnosis,                    treatment and medication usage,                       VIII. Distress and

spiritual, and/or physical nature     transitions during treatment (ie,                    which in turn may lead to poorer
that may interfere with the ability   from chemotherapy to radiation                       clinical outcomes.4,5 Depression
to cope effectively with cancer,      therapy), or transitions off treat-                  is a common psychological
its physical symptoms, and its        ment. Other periods of increased                     symptom experienced by pa-
treatment. Distress extends along     vulnerability for distress among                     tients with cancer that, if left un-
a continuum ranging from com-         patients with cancer may include                     checked, can cause significant
mon normal feelings of vulner-        finding a suspicious symptom,                        distress that may lessen quality of
ability, sadness, and fears to        during diagnostic workup, while                      life.4 Many studies confirm that
problems that can become dis-         awaiting treatment, changing                         distress is often overlooked and

       that many patients do not re-            developed as a visual analog            counseling, or chaplaincy ser-
       ceive appropriate screening or           tool for patients to indicate the       vices) would best serve the pa-
       treatment for it.4,6                     level of distress they encounter        tient for referral.2
           As early as 2007, the Institute of   in the week preceding a health-             Screening for psychosocial
       Medicine (IOM) highlighted the           care-related visit. This tool is de-    distress along the cancer con-
       serious implications of unmet psy-       signed to screen for distress only      tinuum allows navigators to
       chosocial needs faced by pa-             and is not a diagnostic tool for        address patients’ perceptions of
       tients with cancer and their fami-       measuring depression or anxiety.2       quality of life. Effective psycho-
       lies in its report, Cancer Care for          This single-page tool includes      social care, consisting of a multi-
       the Whole Patient: Meeting Psy-          a visual representation of a ther-      disciplinary team approach, has
       chosocial Health Needs. The IOM          mometer with numbers ranked             been shown to positively influ-
       report emphasized the impor-             from lowest (no distress) to high-      ence patient outcomes and
       tance of screening patients for          est (extreme distress), and in-         quality of life.8 The NCCN Distress
       distress and conducting a psy-           cludes a list of potential prob-        Thermometer has a secondary
       chosocial needs assessment to            lems at the right for patients to       benefit of connecting many pa-
       formulate the provision of               self-identify (Figure 2).2 The Dis-     tients to services that might not
       high-quality healthcare. The re-         tress Thermometer can facilitate        otherwise have been identified.
       port acknowledged that these             a conversation between the pa-          Distress screening provides pa-
       tools can be used as part of stan-       tient and healthcare provider to        tients an opportunity to partner
       dard clinical care and to en-            better elicit what is contributing      with their healthcare team,
       hance patient–provider commu-            to the patient’s concerns and           overcomes patients’ reluctance
       nication. A variety of screening         how these issues can be effec-          to ask for help, destigmatizes the
       instruments were reviewed, many          tively resolved. Asking patients,       issue and allows patients to
       of which are brief and can be            “On a scale of 1 to 10 and in-          share their vulnerabilities, and
       self-administered by the patient.7       cluding today, how much dis-            ensures timely referral to sup-
           In general, screening helps          tress have you been experienc-          portive services.
       identify the risk for having psy-        ing in the past week?” opens a              Evidence suggests that dis-
       chosocial health needs. Needs            dialogue with the oncologist or         tress screening alone is not suffi-
       assessment requires more time            navigator and gives permission          cient to improve patient out-
       than screening and involves a            for a discussion of emotions.2          comes. A critical component of
       more in-depth evaluation that                According to the NCCN               a successful distress manage-
       confirms the presence of specif-         Guidelines®, patients should be         ment program is making appro-
       ic psychosocial health needs             screened during the initial visit       priate and timely referrals, and
       and describes their nature. Each         and then as clinically indicated        then following up with patients
       yields personalized information          throughout treatment. Scores of         postreferral to gauge results of
       that can be used to develop              ≥4 suggest a moderate to se-            the experience and provide
       strategies to address an individu-       vere level of distress. If the pa-      feedback as necessary.9 Navi-
       al’s psychosocial needs. Provid-         tient’s distress is mild (score is      gators are instrumental in the
       ing this type of emotional sup-

FIGURE 2. NCCN Distress Therometer

 NCCN Distress Thermometer and Problem List for Patients
 NCCN DISTRESS THERMOMETER                                PROBLEM LIST
 Instructions: Please circle the number                   Please indicate if any of the following has been a problem for you in the
 (0-10) that best describes how much                      past week including today.
 distress you have been experiencing                      Be sure to check YES or NO for each
 in the past week including today.
                                                           YES      NO    Practical Problems
                                                                                          YES                      NO     Physical Problems
                                                                       Child care                                   Appearance
                                                                       Housing                                      Bathing/dressing
                                                                       Insurance/financial
                                                                                                                       Breathing
 Extreme distress                                                      Transportation                               Changes in urination
                             10                                        Work/school                                  Constipation
                               9                                       Treatment decisions
                                                                                                                       Diarrhea
                                                                                                                       Eating
                               8                          Family Problems
                                                                                                                       Fatigue
                               7                            Dealing with children
                                                                                                                       Feeling swollen
                                                            Dealing with partner
                               6                                                                                       Fevers
                                                            Ability to have children
                                                                                                                       Getting around
                               5                            Family health issues
                                                                                                                       Indigestion
                               4                          Emotional Problems                                           Memory/concentration
                               3                            Depression                                              Mouth sores
                                                            Fears                                                   Nausea
                                                            Nervousness                                             Nose dry/congested
                               1                            Sadness                                                 Pain
       No distress                                          Worry                                                   Sexual
                                                           	     Loss of interest in                               Skin dry/itchy
                                                                     usual activities                                  Sleep
                                                           	     Spiritual/religious                               Substance use
                                                                     concerns                                          Tingling in hands/feet

                                                          Other Problems: _____________________________________________________

Source: Adapted with permission from the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) for Distress Management V.2.2018. © 2018
National Comprehensive Cancer Network, Inc. All rights reserved. The NCCN Guidelines® and illustrations herein may not be reproduced in any form for any
purpose without the express written permission of NCCN. To view the most recent and complete version of the NCCN Guidelines, go online to The
NCCN Guidelines are a work in progress that may be refined as often as new significant data becomes available.

and families with psychosocial                         problems with healthcare com-                          issues. Regular interaction with
services, and coordinating psy-                        munication. Navigators can                             navigators allows periodic eval-
chosocial and biomedical care.9                        focus on resolving barriers to                         uation of the success of inter-
   Common barriers to physical                         care, which can be assessed                            ventions to reduce barriers.
and psychosocial care include                          during interviews with patients,                          The supportive role of naviga-
lack of social support, financial                      and gathering data on psycho-                          tion in addressing potential con-
and insurance concerns, and                            social, financial, and practical                       cerns that extend beyond coor-

       dination of care and side effect      ment utilizing the NCCN Distress           On the Distress Thermometer,
       management should help to             Thermometer. The nurse naviga-         Stan reported difficulty with
       alleviate issues related to dis-      tor instructed Stan on the role of     emotional problems in regard to
       tress as they arise. Navigators       the Distress Thermometer and           treatment decisions and feel-
       may strengthen physical and           encouraged its completion by           ings of “sadness,” “fears,” and
       psychosocial adjustment to a          having him mark problem areas          “worry.” In his discussion with the
       cancer diagnosis by identifying       relevant to his situation. Stan        oncology social worker and the
       and promoting effective cop-          scored an 8 on a scale of 0 to 10      nurse navigator, Stan expressed
       ing strategies such as relaxation,    on the Distress Thermometer. In        concern about his disease and
       meditation, counseling, educa-        the areas regarding practical          its treatment, and the possibility
       tion sessions, group social sup-      problems, emotional problems,          that they may affect his ability
       port, or exercise.                    and physical problems, Stan indi-      to care for his family and con-
                                             cated that he was experiencing         tribute to loss of “normal life.”
       Case Scenario: Patient                difficulty and distress. Based on      Stan was encouraged to partic-
       Distress                              Stan’s self-reporting (score of 8      ipate in the cancer center’s
          Stan is a 44-year-old divorced     on the Distress Thermometer), the      Coping Skills program, which
       father with sole custody of 2         nurse navigator referred him to        was facilitated by the oncology
       teenaged children. He is self-em-     the oncology social worker, who        social worker to help patients
       ployed as a landscaper to sup-        contacted him within 48 hours.         with cancer develop skills to
       port his family. After a 2- to 3-        Stan met with the oncology          cope with the emotional and
       week history of abdominal pain        social worker and the nurse            physical impact of cancer.
       and rectal bleeding, he was           navigator to address the areas             Under the physical problems
       sent for a colonoscopy. A com-        of difficulty he reported on the       portion of the Distress Thermom-
       plete colonoscopy could not be        Distress Thermometer. An analy-        eter tool, Stan reported difficulty
       performed, as Stan was found          sis of the screening revealed          with “constipation,” “eating,”
       to have a neoplastic mass of          concerns with practical, emo-          and “fatigue.” He also expressed
       the rectum narrowing the lumen        tional, and physical problems.         concern regarding possible side
       to preclude advancement of            Stan also reported difficulty with     effects of his planned treat-
       the scope. An immediate on-           insurance/financial issues. As a       ment, including neuropathy, di-
       cology consultation was ar-           self-employed landscaper and           arrhea, and neutropenia, and
       ranged. Upon meeting with the         sole provider for his family, Stan     their effect on his livelihood and
       medical oncologist, Stan was          lacked medical insurance cov-          quality of life. The nurse naviga-
       sent for a PET scan, which showed     erage and expressed concern            tor provided education on side
       intensive uptake spanning 12 cm       regarding his ability to pay med-      effect management and re-
       of the rectum and uptake within       ical bills related to his cancer       ferred Stan to the oncology
       a perirectal lymph node.              treatment. The oncology social         nurse practitioner for supportive
          Based on the PET scan results,     worker and nurse navigator re-         care/symptom management
       Stan discussed the treatment          ferred Stan to the facility’s finan-   and to the facility’s dietitian for
       recommendations of neoadju-           cial counselor, state Medicaid         nutritional support.
       vant chemoradiation therapy           outreach officer, and the local            With the use of the NCCN
       with continuous infusion of 5-fluo-   Social Security Administration         Distress Thermometer tool, the
       rouracil for 6 weeks, followed by     office. The nurse navigator also       nurse navigator and oncology
       surgical resection, and conclud-      referred Stan to the national fi-      social worker were able to iden-
       ing with adjuvant chemothera-         nancial assistance resources of        tify Stan’s specific needs and
       py. Stan met with the nurse nav-      CancerCare® and the Chronic            address them accordingly. The
       igator for chemotherapy and           Disease Fund®, and to the rele-        nurse navigator and oncology
       radiation therapy education, as       vant pharmaceutical drug assis-        social worker utilized a multidis-
       well as for a psychosocial assess-    tance programs.                        ciplinary approach to address
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