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Evaluating Patient Navigation:Patient reported outcomes
Kevin Fiscella, MD, MPH
Department of Family Medicine
Wilmot Cancer Center
Patient navigation was explicitly designed to address disparities in cancer care
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“This disconnect between what we know
and what we do is a major determinant
of health disparities…Patient navigation
is a healthcare delivery support system
with the principle function of eliminating
barriers to timely delivery of health care
for individual patients across the
healthcare continuum.”
–Harold P. Freeman, MD 2011
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Dismal progress in addressing health care disparities
� Since 2003, AHRQ has produced an annual report
on progress in addressing health care disparities
(National Healthcare Disparities Report).
� The 2010 report concluded “access and disparities
are not improving.”
http://www.ahrq.gov/qual/nhdr10/Key.htm
What is the key driver for cancer care disparities?
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Cancer care disparities arise from a
mismatch between the needs of
socially disadvantaged patients and the
resources of the health care system
marshaled to respond to those needs
through evidence-based interventions.
Patient centered care = equitable care
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Patient NeedsSystem
Resources
Patient centered care = equitable care
Patient NeedsSystem
Resources
Patient centered care = equitable care
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Patient NeedsSystem
Resources
Patient centered care = equitable care
Inequity in cancer care results from an imbalance between patient needs and system resources-starting with health insurance
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Out of pocket costs tip the scale further
The cancer care system is often fragmented and confusing – creating
even bigger inequities
for those withlow
health literacy
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Patients’cultural and linguistic
needs often go unmet
making the inequity
still worse
Sources of mismatch
� Structural inequality – Laws, policies, regulations,
procedures, practices, and payments that result in
inequitable allocation of resources for socially
disadvantaged patients across the cancer care
continuum.
� System dysfunction – Failure to match available
resources with the needs of socially disadvantaged
patients.14
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Patient navigation can mitigate the second source
� It is a “patient-centric health care service delivery
model” that aims to address patients’ unique needs
using available resources.
� Its power stems in part from a personal
relationship between the navigator and the patient.
� It offers potential for patient empowerment.
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Cancer care without navigation
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Navigation helpstip the balance
to reducedisparities in
care across the cancer
continuum
Key scientific questions regarding navigation
� Under what circumstances will it prove most
effective?
� Which patients derive the most benefit?
� Who should we target?
� How should it be delivered?
� Which of its components produce what results?
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Answers require use of valid measures
� Research and program evaluation require use of
scientifically valid measures.
� What measures are appropriate to assess patient
navigation?
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Identifying measures
� The ACS convened the National Patient Navigator
Leadership Summit, March 23-24, 2010.
� Diverse patient navigation stakeholders
participated.
� Our work group task: identify Patient Reported
Outcome measures for patient navigation across the
cancer care continuum.20
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What are patient reported outcome (PRO) measures?
� Scientifically valid measures reported by patients
that are specifically designed to capture outcomes
that are clinically relevant and meaningful to
patients.
� Common examples include patient ratings of their
health, symptoms, experience, pain and
psychological distress.21
Process of identifying PROs
� Agreement on a definition of navigation.
� Consensus on a conceptual model.
� Identification of key domains for PROs relevant to
navigation.
� Determination of criteria for selecting existing
measures from these domains.
� Selection of measures.22
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Definition of Patient Navigation
“Individualized assistance offered to patients, families, and caregivers to help overcome barriers and facilitate timely access to quality medical and psychosocial care from pre-diagnosis through all phase of the cancer experience.”
C-Change
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Conceptual model for patient navigation
PatientNavigation
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Navigation starts with relationship
PatientNavigation
Navigator-Patient
Relationship
Technical competence is the other building block
PatientNavigation
Navigator-Patient
Relationship
Technical Competence
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Task #1: emotional support
PatientNavigation
Navigator-Patient
Relationship
Technical Competence
EmotionalSupport
PatientNavigation
Navigator-Patient
Relationship
Technical Competence
EmotionalSupport
Education &Coaching
Task #2: education and coaching
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PatientNavigation
Navigator-Patient
Relationship
Technical Competence
EmotionalSupport
Education &Coaching
Liaison &Advocate
Task #3: acting as a liaison and advocate
PatientNavigation
Navigator-Patient
Relationship
Technical Competence
EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Task #4: referral to community resources
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PatientNavigation
Navigator-Patient
Relationship
Technical Competence
EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
Task #5: addressing logistical barriers
Navigation is notprescriptive –one size fits
one size.
EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
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EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
Navigation represents a complex and
adaptivedelivery model that is grounded in the
needs and preferences of the
patient.
Intermediate PRO #1: satisfaction with navigation
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EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
SatisfactionWith PN
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EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
SatisfactionWith PN
Self Management
Intermediate PRO #2: patient confidence in self management
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EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
SatisfactionWith PN
Self Management
Culturally Competent care
Intermediate PRO #3: patient perceived culturally competent
care
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EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
SatisfactionWith PN
Self Management
Culturally Competent care
Barriers tocare
Intermediate PRO #4: patient perceived barriers
Major PROs #1: satisfaction with cancer related care
EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
SatisfactionWith PN
Self Management
Culturally Competent care
Barriers tocare
SatisfactionWith Cancer
RelatedCare
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EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
SatisfactionWith PN
Self Management
Culturally Competent care
Barriers tocare
SatisfactionWith Cancer
RelatedCare
Patient Function
Major PRO #2: Patient reported function
EmotionalSupport
Education &Coaching
Liaison &Advocate
Referral toCommunity Resources
Address logistical barriers
SatisfactionWith PN
Self Management
Culturally Competent care
Barriers tocare
SatisfactionWith Cancer
RelatedCare
Patient Function
PatientSymptomBurden
Major PRO #3: Patient symptoms
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Criteria for choice of PROs
� Face validity.
� Potential responsiveness to navigation.
� Reliability.
� Construct validity in relevant populations.
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Review of existing measures
� PROMIS -Patient-Reported Outcomes Measurement
Information System.
see http://www.nihpromis.org/
� CAHPS -Consumer Assessment of Health Providers.
see https://www.cahps.ahrq.gov/default.asp
� Measures developed through the NCI-sponsored Patient
Navigation Research Program.
� Other PROs potentially relevant to navigation.42
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Screening
� Self reported adherence to screening (NHIS).
� Self efficacy (Perceived Health Competence)
� Barriers (MEPS).
� Cultural competency (CAHPS supplemental
measures).
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Follow-up on abnormal screening
� Self reported adherence to follow-up (NHIS).
� Patient Satisfaction with Cancer Care (PNRP).
� Psychological distress (PROMIS).
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Cancer treatment
� Self reported adherence to treatment (MOS
general adherence).
� Self reported medication adherence (Morisky).
� Attitudes and Beliefs about Medication (BMQ).
� Cost-related non-adherence (MCBS non-adherence
scale).
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Cancer treatment
� Self efficacy for communication (CASE-Cancer).
� Alliance -Patient satisfaction with patient
navigation (PNRP).
� Health status – PROMIS/FACIT.
� Symptoms – PROMIS.
� Comorbidity – Charlson.46
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Survivorship
� Previously mentioned generic measures.
� Patient Activation Measure (PAM).
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End of Life
� Symptom burden (PROMIS).
� Functional status (PROMIS).
� Family satisfaction (FamCare).
� Caregiver burden (Zarit Burden Interview).
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Conclusion
� There are range of PROs relevant to patient
navigation across the cancer care continuum.
� Which will prove most sensitive to navigation for
whom and under what circumstances is area ripe for
research.
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Acknowledgements
PRO Work Group: Sean Ransom (Co-chair), Pascal
Jean-Pierre, David Cella, Kevin Stein, Joseph Bauer,
Rebecca Crane Okada, Sharon Gentry, Rosalie
Canosa, Tenbroeck Smith, Jean Sellers, Emelia
Jankowski, and Karyn Walsh.
Funders: ACS and NCI (U01 CA116924-01)
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THANK-YOU
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Satisfaction with cancer related Care
� health concerns were understood.
�I felt that I was treated with courtesy and respect.
�I felt included in decisions about my health.
�I was told how to take care of myself.
�I felt encouraged to talk about my personal health concerns.
�I felt I had enough time with my doctor.
�I felt too rushed.
�My questions were answered to my satisfaction.
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Satisfaction with cancer related Care
� The written materials I received were useful to me.
� I did not get a good explanation of all the tests I took.
� Health condition explained in a way I could understand.
� My treatment was explained in a way I could understand
� I had to wait a long time at the clinic or hospital.
� Making an appointment was easy.
� I was worried about paying for the services I received.
� It was a hassle to arrange for transportation to the clinic.
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Satisfaction with navigation (interpersonal)
I feel my navigator …..
�1. is easy to talk to
�2. listens to my problems
�3. is dependable
�4. is easy for me to reach
�5. cares about me personally
�6. is courteous and respectful to me
�7. gives me enough time
�8. figures out the important issues in my health care
�9. makes me feel comfortable 54
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Satisfaction with navigation (logistical)For this problem, were you very satisfied, a little satisfied, not satisfied with the
help you received from the navigator or this was not a problem.
� making medical appointments
� understanding what you were being told to do
� getting results of tests
� dealing with financial concerns related to getting the care…
� getting transportation to the doctor’s office
� encouraging you to talk to the doctor about your concerns
� dealing with fears related to your health issues
� getting the health information you needed
� making you more involved in decisions about your health care55
� dealing with work or employer issues related to health care
�understanding your health issues
� knowing who to call when you had a question
� learning about services in the community that are available to you
� dealing with housing and landlord issues
� dealing with the paperwork
� understanding letters, reports, and health education materials
� getting child care or eldercare so that you could go…
� dealing with health insurance matters
� dealing with doctors…others who do not speak your language
� overcoming barriers related to a physical disability
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