Informed & Shared Decision Making Is for Everyone
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Transcript of Informed & Shared Decision Making Is for Everyone
Jack Fowler, PhD
Senior Scientific Advisor
Informed & Shared Decision Making
is for Everyone
Two Most Cited Reasons that All Decisions Are Not Shared
• Providers can’t or won’t do it
• Many patients don’t want to be informed
and share in decisions, or they are unable
to
Testing Our First 30-Minute BPH Program
0%0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Not enough About right Too much
Doctors (N=20) VA Patients (N=32)
How would you
rate the amount
of information?
Testing Our First 30-Minute BPH Program
0%
20%
80%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Not enough About right Too much
Doctors (N=20) VA Patients (N=32)
How would you
rate the amount
of information?
Testing Our First 30-Minute BPH Program
0%
20%
80%
19%
75%
6%0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Not enough About right Too much
Doctors (N=20) VA Patients (N=32)
How would you
rate the amount
of information?
One Universal Truth
Every time we ask, people (particularly
physicians) underestimate how much
patients value getting information about
their medical conditions and being
involved in decisions.
Actual Length of DVD & Patients’ Rating of Length
Dartmouth patient data collected between July 2005 and July 2009
19%14% 12%
78% 83% 84%
0%
20%
40%
60%
80%
100%
31-38 45-46 50-55
Too short
About right
Too long
minutes minutes minutesn=1847 n=720 n=826
And these groups are specifically
labeled Least Able and Least Interested?
• Those with low literacy or numeracy
• Those with less formal education
• Those 65 or older
Do groups like that need special help with information?
• Definitely!
• Whenever baseline knowledge is
measured, it almost always documents
that those groups are less informed than
average
DECISIONS Survey Data
• National sample of 3000+ adults 40 or
older about 9 different medical decisions
• Each respondent who had faced a
decision was asked 4-5 knowledge
questions relevant to that decision
Mean Knowledge Score by
Education
47%
44%
43%
39%
0% 10% 20% 30% 40% 50%
College Grad or Higher
Some College or 2-Year
High School Grad
Some High School or Less
N=4935Percent Correct
Mean Knowledge Score by Age
42%
45%
46%
43%
0% 10% 20% 30% 40% 50%
Age 75+
Age 65 to 74
Age 55 to 64
Age 40 to 54
N=4946Percent Correct
Do Decision Aids Help People Who Begin with Less
Knowledge?
The most common result of studies is
that good decision aids help those
with less knowledge as much as
those who know more.
At Least 3 Studies Suggest the Less Educated May Distinctively Benefit
That is, that good decision
support can close the gap
between those who start out with
more and less knowledge.
Makoul et al. Compared Video & Print Materials
• Almost half the sample tested as having
marginal or inadequate literacy
• For most comparisons, they found low and
higher literacy benefitted from the
materials, but differences in knowledge
persisted
Mean Asthma Knowledge Scoresby Literacy Level
0%
10%
20%
30%
40%
50%
60%
70%
Limited Literacy Adequate Literacy
Control Print Video
Pe
rce
nt
Co
rre
ct
Mean Asthma Knowledge Scoresby Literacy Level
22%
33%
0%
10%
20%
30%
40%
50%
60%
70%
Limited Literacy Adequate Literacy
Control Print Video
Pe
rce
nt
Co
rre
ct
Mean Asthma Knowledge Scoresby Literacy Level
22%
33%
47%
57%
0%
10%
20%
30%
40%
50%
60%
70%
Limited Literacy Adequate Literacy
Control Print Video
Pe
rce
nt
Co
rre
ct
Mean Asthma Knowledge Scoresby Literacy Level
22%
33%
47%
57%
47%
58%
0%
10%
20%
30%
40%
50%
60%
70%
Limited Literacy Adequate Literacy
Control Print Video
Pe
rce
nt
Co
rre
ct
For Information on Colon Cancer Screening
• Those with lower literacy benefitted
distinctively from the audio-visual (that is,
their knowledge increased more compared
to those given the same info in print form)
• This is an example of how high-quality
information may be particularly valuable
for those with fewer skills
Mean CRC Screening Knowledge Scoresby Literacy Level
59%
82%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Limited Literacy Adequate Literacy
Print Video
Pe
rce
nt
Co
rre
ct
Mean CRC Screening Knowledge Scoresby Literacy Level
59%
82%
72%
82%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
Limited Literacy Adequate Literacy
Print Video
Pe
rce
nt
Co
rre
ct
Eckman Studied Effects of Decision Aid on Managing Heart
Disease
• Compared knowledge before and after
audio-visual program
• Analysis compared responses of patients
with high and low health literacy levels
Mean Cardiac Knowledge Scoresby Health Literacy Level
64%71%
78% 81%
0%
20%
40%
60%
80%
100%
Lower Health Literacy Higher Health Literacy
Before DA Final Follow-Up
Pe
rce
nt
Co
rre
ct
n=68 n=101
Knowledge Changed,
But What About Behavior?
Body Weight? 1.7%
# of Smokers?
Daily Cigarettes?
2.8%
HigherHealth Literacy
LowerHealth Literacy
27% 21%
23% 46%
Note: Percent of change from Pre-Intervention to Final Follow-up
Understanding Risks
1. Statement of relative risk reduction (“Reduces risk by 13%”)
2. Statement of absolute risk reduction (“8% have stroke without aspirin; 7% with
aspirin”)
3. Add 100-person charts to Statement 2
Galesic et al. studied different ways ofcommunicating risk:
Understanding Risks
3. Add 100-person charts to Statement 2
○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○●●●●●●●●○○
○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○●●●●●●●○○○
Without Aspirin
(“8% have stroke without aspirin; 7% with aspirin”)
With Aspirin
Findings
• Absolute risk statement produced much
better understanding of risks than relative
risk reduction statement
• The icons added considerably to
understanding over just the statement
Findings with Respect to
Literacy
• Compared understanding of risk reduction
for samples of college students and senior
citizens recruited from community centers
• Both groups were stratified by score on a
numeracy test
Percent of Respondents Who UnderstoodRisk Reduction by Numeracy Level and
Quality of Data Presentation
0%
20%
45%42%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Worst Presentation Best Presentation
Low Numeracy, Elderly
Low Numeracy, Student
High Numeracy, Elderly
High Numeracy, Student
Percent of Respondents Who UnderstoodRisk Reduction by Numeracy Level and
Quality of Data Presentation
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Worst Presentation Best Presentation
Low Numeracy, Elderly
Low Numeracy, Student
High Numeracy, Elderly
High Numeracy, Student
What About Interest in Sharing
Decisions?• Various surveys have asked questions
about interest in sharing, and the results
depend heavily on how the question is
asked.
• The best evidence comes from patients
who have actually experienced decision
aids and shared decision making.
At Dartmouth-Hitchcock
• Patients routinely see decision aids
for at least 11 different decisions
• They are surveyed after the see them
Results for Those Aged 65+
• Asked who should make the decision:
– Mainly the doctor
– Shared equally
– Mainly the patient
Who Should Make Decisions?
61%
55%
37%41%
0%
10%
20%
30%
40%
50%
60%
70%
Ages 18 to 64 Ages 65+
Mainly Me Shared Equally
Dartmouth patient data collected between July 2005 and July 2009
n=1418 n=713
Would patients recommend
decision aids to others?
• Definitely
• Probably
• Probably not
• Definitely not
Would You Recommend DA for Others?
26%
20%
69%
76%
0%
10%
20%
30%
40%
50%
60%
70%
80%
Ages 18 to 64 Ages 65+
Definitely not Probably not Probably would Definitely would
Dartmouth patient data collected between July 2005 and July 2009
n=1374 n=687
We Have Looked Since 1989
We have never seen evidence that
older or less educated people push
back against shared decision making
when they are given encouragement
and decision support.
Like the Galesic Study
• We find that well-designed decision
aids are helpful to everyone
• The tools that are not helpful to the
less literate tend not to be particularly
helpful to anyone
Of Course, There Are Challenges
• The less information a person has to start,
the more important it is to have good, clear
decision aids
– We believe that multi-media programs, with
pictures and voice support, are particularly
good
• And they may well need extra,
personalized decision support to get them
where they need to be to form an informed
opinion
We Think the Bottom Line is Clear
• Those with less education and literacy skill are the most in need of decision aids and decision support
• They have the most to gain
• When they are given good tools, they do learn
• When they are encouraged and supported, most of them embrace the chance to help make decisions
THANK YOU!