Transcript Prof Dean Schillinger presentation Glasgow 2010

Literacy, Health Communication
& Self-Management
Dean Schillinger, MD UCSF Professor of Medicine in Residence
Director, UCSF Center for Vulnerable Populations SF General Hospital
Chief, California Diabetes Program
CA Dept Public Health
Objectives



Review statistics and definitions re literacy and 'health
literacy' in US, especially public healthcare systems
Describe research that shows associations b/w health
literacy and health outcomes, with diabetes selfmanagement as exemplar
Argue that health communication is partial mediator of
this relationship, and share some practice-based
research re health communication interventions
Vulnerabilities Cluster
within Individuals and Neighborhoods
Assessing for Vulnerabilities
V iolence
U ninsured
L iteracy and Language
N eglect
E conomic hardship/food insecurity
R ace/ethnic discordance, discrimination
A ddiction
B rain disorders, e.g. depression, dementia, personality disorder
I mmigrant
L egal status
I solation/Informal caregiving burden
T ransportation problems
I llness Model
E yes and Ears
S helter
Schillinger 2007
What is Health Literacy?

“The degree to which individuals have the
capacity to obtain, process, and understand basic
health information and services needed to make
[informed] health decisions.”
-Institute of Medicine, 2004

?3 domains: oral (speaking, listening); written
(reading, writing); numerical (quantitative).

Capacity/Preparedness  Demand Mismatch
1st National Assessment of Health
Literacy
n=19,714
 Below
Basic: Circle date on doctor’s
appointment slip
 Basic: Give 2 reasons a person with no
symptoms should get tested for cancer
based on a clearly written pamphlet
 Intermediate: Determine what time to
take Rx medicine based on label
 Proficient: Calculate employee share of
health insurance costs using table
National Center for Educational Statistics, U.S. Department of Education, 2003
National Health Literacy Assessment
12%
n=19,714 U.S. Adults
Proficient
53%
Intermediate
Below
Basic
14%
Hispanic
Basic
22%
Average
Medicare
National Assessment of Adult Literacy (NAAL): National Center for Educational Statistics, U.S. Department
of Education, 2003.
Literacy and health

In elderly population, limited literacy
associated with
»
»
»
»
»

worse self-rated access to care,
lower self-rated health
higher rates of some chronic diseases,
Later presentation with cancer
higher adjusted mortality
In public hospital patients with diabetes,
limited literacy associated with poor
glycemic control/complications
Sudore, Schillinger 2006 JGIM
Schillinger et al. 2002 JAMA
Self-reported chronic conditions among an elderly cohort,
by literacy* (N=2, 512)
Limited
literacy
Adequate
literacy
P-value
Hypertension
62.7%
54.7%
<.0001
Diabetes
25.2%
14.6%
<.0001
Obesity
31.1%
23.0%
<.0001
Heart Disease
21.5%
20.5%
0.6
Sudore, Schillinger JGIM 2006
Patients with Diabetes and Low Literacy Less
Likely to Know Correct Management
Need to Know:
symptoms of low blood
sugar (hypoglycemia)
Low
Moderate
High
Low
Need to Do:
Moderate
correct action for
hypoglycemic symptoms
High
0
20
40
60
80
Percent
Williams 1998
*Williams et al., Archive of Internal Medicine, 1998
100
Literacy is Associated with Glycemic Control, N=408
Inadequate
50
Marginal
Adequate
% of patients
40
Adjusted OR=0.57,
p=0.05
Adjusted OR=2.03,
p=0.02
30
20
10
0
1st Quartile
(Tight Control: HbA1c7.2%)
4th Quartile
(Poor Control: HbA1c>9.5%)
Schillinger JAMA 2002
Adjusted odds of self-reported diabetes complications, for patients
with inadequate vs. adequate literacy (N=408)
Complication
n**
AOR
95% CI
Retinopathy
111
2.33
(1.19-4.57)
Nephropathy
62
1.71
(0.75-3.90)
Lower Extremity Amputation
27
2.48
(0.74-8.34)
Cerebrovascular Disease
46
2.71
(1.06-6.97)
Ischemic Heart Disease
93
1.73
(0.83-3.60)
Schillinger JAMA 2002
Limited Health Literacy Patients
Experience more Hypoglycemia N=16,000
16%
14%
12%
10%
Adequate
Limited
8%
6%
4%
2%
0%
Problems
learning
Help reading
Not
confident
with forms
P for all<0.001
Sarkar, Adler, Schillinger, in review
Limited
literacy associated with higher adjusted mortality (OR 2.03, AOR 1.75)
How is Literacy Linked
to Diabetes Outcomes? 4 hypotheses
1.
Confounding
Limited literacy confounders  illness
2.
Mediation at individual or community level
Limited literacy health mediators (behavior and
exposure) illness
3.
Reverse Causation/cyclical
Illnesslimited literacyworse health trajectory
4.
Effect Modification at Health Care System Level
Limited literacy poor quality of care  illness and
premature death/morbidity
Schillinger IOM 2004
Could poor communication be a
mechanism?

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

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High self-management demands
Increasing reliance on technology
Large mismatch in training between health
professionals and target populations (“health
literacy”)
Counterbalance role of mass media in consumerist
society
Strong inverse relationship between educational
attainment and chronic illness burden
Conceptual framework: 4 basic functions of
communication in diabetes care
•Physician-patient
concordance
elicitation
1. Disease state
2. Barriers
Communication
Characteristics
Schillinger, AJ Bioethics 2007
Health
outcomes
Trust / therapeutic alliance
3.Diagnosis
explanation
Clinical
decision
-making
4. Treatment
plan
Treatment
adherence
How Does Limited Literacy Affect
(Verbal) Clinical Interactions?





Impedes understanding of technical information and
explanations of self-care
Impairs shared decision-making
Speed of dialogue, extent of jargon, lack of interactivity
determinants of effectiveness of communication
Impairs medication communication, jeopardizing patient
safety (medication “discordance”)
Interaction between limited Eng proficiency and limited
literacy
Fang et al. 2006 JGIM
Schillinger et al. 2004 Pt Ed and Counseling
Castro et al, Am J Health Beh 2007
Schillinger et al. 2003 Arch Int Med
Schillinger et al 2004. AHRQ Advances in Patient Safety
Schillinger 2004
Diabetes Patients with Limited Literacy Experience
Poorer Quality Communication, N=408
50
Inadequate FHL
Adequate FHL
40
OR=1.9;p=0.04
OR=3.2;p<0.01
OR=3.3;p=0.02
30
OR=2.4;p=0.02
20
10
0
32%
33%
26%
13%
Doctor Use Words
Not Understood
(Often/Always)
21%
13%
Give You Test Results
w/o Explanation
(Often/Always)
20%
13%
Confused About
Medical Care
(Often/Always)
Doctor Understand
Problems Doing Rx
(Never/Rarely/ Sometimes)
Medical Jargon
GLUCOMETER
HEMOGLOBIN A1c
DIALYSIS
ANGINA
RISK FACTORS
CREATININE
Jargon Terms












…unclarified
Glucometer
Immunizations
Weight is stable
Microvascular complication
System of nerves
HbA1c
EKG abnormalities
Dialysis
Wide Range
Risk factors
Kidney function
Interact
…from Patient’s own visit:
• benign
• blood drawn
• blood count






•
•
•
•
•
•
•
•
…clarified
Angina
Microalbuminuria
Ophthalmology
Genetic
Creatinine
Symptoms
CAT scan
blood count
correlate
stool was negative
stool
baseline
respiratory tract
polyp
•washed out of your system
•receptors
•short course
•renal clinic
•blood cells
•increase your R
•screening
•vaccine
Function of Jargon
Assess Symptoms
10%
Deliver Test Results
24%
Provide
Recommendations
37%
jpm=0.4
n = 60
Provide Health
Education
29%
Castro, Schillinger AJHB 2007
Dialysis “Do you know what the number one cause for people in
this country being on dialysis is? Diabetes”
Would you please tell me in your own words In your own words, what do you think the
what dialysis means?
doctor was trying to tell the patient?
“Check something every day.”
1 “Sugar is too high.”
1
“What? Is that about you toes?”
1 “I can't say it.”
1
“It means that your diabetes is going worse
that you have to exercise to make
diabetes.”
1
“You got to get on machine to pump.. redo
blood to come up to par.”
4 “That the sugar was not…hmm.”
“…regarding kidney.”
2 “Diabetes is one cause of kidney problems.” 3
“That is a warning…about the kidney…my
doctor told me about those side effects of
the diabetes.”
“About dialysis, because they are warning
us, they are telling me about the
3
4
complications…that if I'm having problems in
my kidney, I'm going to have dialysis.”
“It’s a way to clean blood get off toxins out
the blood.”
4
“Means that more people are getting
diabetes.”
“That you need to be on dialysis to cleanse
blood or gonna die.”
1
1
4
Patient Comprehension of Jargon (% Some /Total Understanding)
40
35
Unclarified Jargon
Unclarified /
Own Visit
Clarified
Jargon
30
25
20
15
10
5
0
Self-Report / No Con
Investigator-assessed / No Con
Self-Report / Con
Investigator-assessed / Con
Literacy and the Digital Divide in Diabetes*
N= 14,102
*For difference between those with and without limited health literacy, p for all<0.01
Sarkar, Karter, Schillinger J Health Comm 2010
Numeracy and Diabetes:
A Special Case?

Among people with diabetes on insulin, better
diabetes-related numeracy ---a subset of the larger
construct of health literacy--- modestly associated
with better HbA1c

The Diabetes Literacy and Numeracy Education
Toolkit (DLNET) of Vanderbilt University:
» materials to facilitate diabetes education and management
in patients with low literacy and numeracy
Cavanaugh. Ann Int Med 2008
Osborn CY Diab Care 2009
Wolff K. Diab Ed 2009



Ensures info understood/integrated into memory;checks for
lapses
Opens dialogue re health beliefs; reinforces and tailors health
messages
Promotes a common understanding; elicits patient participation
Closing the Loop, aka “Teach-Back”



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Physicians assessed recall or comprehension
for 15/124 new concepts (12%)
When new concepts included patient
assessment, patient provided incorrect
response half the time (7/15=47%)
Visits using interactive communication loop
not longer (20.3 min. vs. 22.1 min)
Application of loop associated with better
HbA1c (AOR 9.0, p=.02)
Schillinger Arch Int Med 2003
“I’m sorry, but I can’t carry on an intelligent conversation. I’m visual.”
Provider-Patient Concordance in
Medication Regimen

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Patients with atrial fibrillation at high risk of stroke
Treatment with warfarin (blood-thinner) reduces
risk of stroke by 70%
Requires close monitoring and frequent dose
adjustments
Miscommunication/ inappropriate dosing can lead
to poor outcomes (stroke or bleeding)
Literacy, Discordance and Safety
Anticoagulant regimen concordance lower for
patients with inadequate vs adequate literacy
(42 % vs 64 %),
 Anticoagulant discordance associated with
being out of therapeutic range:

» under-anticoagulation
» over-anticoagulation
Schillinger J Health Comm 2006
Computerized Visual Medication
Schedule
Machtinger, Schillinger 2007 J Comm J Qual Safety
Overall Results:
Time To Therapeutic Range (N=142)
A Diabetes Guide That Helps Patients
Take Charge and Make Changes
Terry Davis, PhD
LSUHSC
Darren DeWalt, MD
UNC
Dean Schillinger, MD
Hilary Seligman, MD
UCSF
____________
© American College of Physicians Foundation
ACPF Guide is Practical and Personal
• Patients’ voices
illustrate concrete,
practical tips
• Patients suggest
achievable goals
• Authentic photos help
tell the story
Focus is on Doing
• ‘You Can Do It’
checklist at end of
each chapter
• Concrete examples
of successful action
plans
• Emphasis on small
steps and patient
choice
Pictures Help Tell the Story


Patients looked at pictures first
Particularly liked pictures of food comparisons
Too much
Right size
Significant Improvement
In Pre- and Post-tests*

Knowledge

Self-efficacy

Diabetes distress

Taking ownership of health
care

Self-reported diabetes
management
*p<0.01 Dewalt, Schillinger et al 2008
Should We Screen for Limited HL?

RCT of screening and feedback of limited HL to
primary care physicians
Individual Management Strategies
Teaching
Review meds
DM Educator
p=.07
Pictures/Diagrams
p=.05*
Nutritionist
p=.04*
Family Members
0
Intervention
Control
25
50
75
100
% of visits
Seligman, Schillinger JGIM, 2005.
Physician Responses to HL
Screening
p<.001
100
% of visits
75
p=.10
50
25
p=.01
0
ManagementIntensive
Satisfied with
Visit
Self-Rated
Effectiveness
Intervention
Control
What Do Physicians
Say They Need?
yes
Diabetes Class
no
n/r
Medication Adherence
Tools
Communication Training for
Patients
More Appropriate
Educational Materials
Increased Access to Allied
Health Professionals
Improved Labeling of Pill
Bottles
0%
20%
40%
60%
80%
100%
IDEALL Project:
Improving Diabetes Efforts Across
Language and Literacy
• Community Health Network of
SF/DPH
• AHRQ
• CMWF, TCE, CHCF
Schillinger Diab Care 2009
Automated Telephone Diabetes SelfManagement Support (ATSM)
Nurse Diabetes
Care manager
ATSM: Weekly
Monitoring and
Health Education
Primary Care
Physician
Patient





Interactive health technology, touch tone response
Weekly surveillance & health education (39 weeks=9 mos)
In patients’ preferred language (English, Spanish or Cantonese)
Generates weekly reports of out of range responses
Live phone follow-up through a bilingual nurse ->behavioral action
plans
Group Medical Visits (GMVs)
Primary Care Provider
Health Educator
Pharmacist
Monthly Group
Medical Visits
EnglishSpeaking
Groups





CantoneseSpeaking
Groups
SpanishSpeaking
Groups
6-10 patients in monthly group meetings (9 months)
In patients preferred language ( English, Spanish, or Cantonese)
Facilitated by a bilingual health educator and a primary care provider
A pharmacist present at end of each group visit
Encourage patients to become active in self-care through participatory
learning and peer education ->behavioral action plans
Key Findings of IDEALL Program , N=339
Estimating Public Health “Reach” of Programs
Composite reach product
ATSM
GMV
 Overall
22.1
4.8
 English
 Chinese
 Spanish
20.0
22.0
24.3
6.4
2.7
4.0
 Adequate Literacy
 Limited Literacy
15.6
28.0
7.6
3.6
Schillinger, et al.Health Ed and Behavior 2007
Results, N=339 :
Structure and Process Measures
70
60
*
50
58.9
*
80
60.2
75
70
48.2
40
41
30
36.8
39.3
*
73.5
71.7
77.2
73.3
71.7
65
60
20
pre
UC
ATSM
GMV
*
70
post
UC
ATSM
5
72.9
*≠
68.9
65
62.9
65.4
63.4
*
4.4
4
3.9
59.2
55
GMV
Self-Efficacy
PACIC
≠
75
60
*
77.2
3.8
3.7
3.9
4.1
3
50
UC
ATSM
UC
GMV
ATSM
GMV
Self-Management Behavior
Communication
*P<.05.
Schillinger, Diab Care 2009
Results: Functional Outcomes
OR 0.37 vs UC
Rate ratio 0.5 vs UC, 0.35 vs GMV
20
5
4
3
2
1
0
3.9
15
3.8
3.6
3.1
*
3.6
10
≠
ATSM
GMV
Bed Days
pre
17
14
13
*
5
1.4
UC
18
17
6
0
UC
post
ATSM
GMV
Diabetes Interference
70
65
65
67
60
64.2
60
55
≠
61.7
58.8
63
50
57.2
60.2
55
57.1
56.7
51.3
50
50.9
45
50
UC
ATSM
UC
GMV
ATSM
GMV
SF12 - Physical Health
SF12 - Mental Health
*P<.05
Clinician Survey, N= 87 physicians
–Compared to UC, ATSM patients ATSM more likely
to be activated to create and achieve goals for
chronic care (standardized effect size, ATSM vs.
UC, +0.41, p=0.05).
–Over half of physicians reported that ATSM helped
overcome 4 of 5 common barriers to diabetes care
–Rated quality of care as higher in ATSM compared
to usual care (OR 3.6, p=0.003), and GMV (OR 2.2,
p=0.06)
–Majority (88%) felt ATSM should be expanded to
more patients with diabetes and other conditions
Bhandari, Handley Schillinger SGIM 2008
Health Literacy &Self-Management:
Conclusions





Mechanisms by which limited health literacy affect health
outcomes likely multiple
Inadequate self-management skills may be one mediator
Communication characteristics of health care system
contribute to impaired self-management
Re-structuring health care system (increasing
interactivity, employing appropriate technology) can
improve reach and effectiveness of health care, enhance
quality, promote safety
Health Literacy Universal Precautions Toolkit has great
resources: http://www.nchealthliteracy.org/toolkit/
END OF TALK
Designing Easy-to-Read Materials
>Use large font written at 5th grade level
>Pictures that help explain text
>Clear headings and layout
>PRIORITIZE the info—Does it REALLY need to be included?
>Use suitability assessment
>Involve the target populations from the beginning!
>Focus on ‘Need to Know’; ‘Need to Do’
 Health Literacy Universal Precautions Toolkit (Tool 11 and 12)
has great resources:
http://www.nchealthliteracy.org/toolkit/
Recommendations re
Verbal Interactions
Select no more than 3 key points
 Avoid Jargon/Use “living room language”
 Use Teach – Back Method
 Always reconcile medications
 Health Literacy Universal Precautions Toolkit
(esp Tool 11) has great resources:
http://www.nchealthliteracy.org/toolkit/

Recommendations re
Numerical Discussions






Relatively understudied
Present risk in terms of an easily understandable timeframe (e.g.
10 years)
Provide absolute risks, not relative risks (e.g. 2 out of 100 vs. 4
out of 100, not ‘a 50% reduction’)
Present risk frequencies (5 out of 100), not percentages.
Use both + and – framing: “Over 10 years, 30 out of 100 will get
diabetes, but 70 out of 100 won’t.”
Consider Diabetes Numeracy Toolkit/Diabetes Numeracy test
Special considerations

Taking a holistic view on health literacy
and health communication for the elderly
Factors that Affect the Health Literacy of Elders
Chronic Disease
Burden
Number of
medications
Caregiver
Health
Burden
Literacy
Hearing
Impairment
Cognitive
Visual
Impairment
Impairment
US. Department of Health and Human Services, 2007