evaluating patient navigation: patient reported...

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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 NeedsSystem

Resources


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Patient NeedsSystem

Resources


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


EmotionalSupport

PatientNavigation

Navigator-Patient

Relationship


EmotionalSupport

Education &Coaching

Task #2: education and coaching

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PatientNavigation

Navigator-Patient

Relationship


EmotionalSupport

Education &Coaching

Liaison &Advocate

Task #3: acting as a liaison and advocate

PatientNavigation

Navigator-Patient

Relationship


EmotionalSupport

Education &Coaching

Liaison &Advocate

Referral toCommunity Resources

Task #4: referral to community resources

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PatientNavigation

Navigator-Patient

Relationship


EmotionalSupport

Education &Coaching

Liaison &Advocate


Address logistical barriers

Task #5: addressing logistical barriers

Navigation is notprescriptive –one size fits

one size.

EmotionalSupport

Education &Coaching

Liaison &Advocate



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EmotionalSupport

Education &Coaching

Liaison &Advocate



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



SatisfactionWith PN

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EmotionalSupport

Education &Coaching

Liaison &Advocate



SatisfactionWith PN

Self Management

Intermediate PRO #2: patient confidence in self management

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EmotionalSupport

Education &Coaching

Liaison &Advocate



SatisfactionWith PN

Self Management

Culturally Competent care

Intermediate PRO #3: patient perceived culturally competent

care

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EmotionalSupport

Education &Coaching

Liaison &Advocate



SatisfactionWith PN

Self Management


Barriers tocare

Intermediate PRO #4: patient perceived barriers

Major PROs #1: satisfaction with cancer related care

EmotionalSupport

Education &Coaching

Liaison &Advocate



SatisfactionWith PN

Self Management


Barriers tocare

SatisfactionWith Cancer

RelatedCare

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EmotionalSupport

Education &Coaching

Liaison &Advocate



SatisfactionWith PN

Self Management


Barriers tocare


RelatedCare

Patient Function

Major PRO #2: Patient reported function

EmotionalSupport

Education &Coaching

Liaison &Advocate



SatisfactionWith PN

Self Management


Barriers tocare


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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