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The universe is 13.799±0.021 billion years old
There are 100-200 billion galaxies in the universe
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The Milky Way contains 100 million planets
The earth is one of 1000 million planets in the Milky Way
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There are 7.35 billion humans on the planet
1.7 million are diagnosed with breast cancer each year
231,840 new diagnoses occurred in the US in 2015
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3900 of which occurred in Minnesota in 2015
…one of whom comes into your clinic
• 1.9 cm IDC
• 1 of 3 SN nodes positive
• Nottingham grade 2
• ER 95% (strong)
• PR 37% (intermediate)
• HER2/CEP17 ratio 1.7
dedededededededeedededes positive
grade 2
What do we do now, Doc?
Okay, so with
radiotherapy alone, her
chance of cure is 65%.
With adjuvant
endocrine treatment, I can
reduce the risk of relapse by
60-70%60-70%
Which really comes down to an
absolute benefit of 20%
But if her Oncotype
comes back high risk, chemotherapy
gives the same absolute benefit, lessening the
risk reduction of endocrine rx
te
And any treatment I offer will have a much higher chance of side
effects than benefit, but the benefit is permanent and
the harms temporary
really comes down to an
absolute benefit of 20%
y treatment I have a much
hance of side n benefit, but the permanent ande harms mporary
Which really means I need to
treat 5 people like her for one to
benefit
Informed
Decision
Making
How do we know…..
That she will understand what this doctor
tells her?
That this doctor even understands what he himself
tells her?
Informed Consent• The nature of the decision/procedure
• Reasonable alternatives to the proposed intervention
• The relevant risks, benefits, and uncertainties related to it
• Assessment of patient understanding
• Decision by patient to voluntarily accept the intervention
Implications
• Patient is expected to understand the numbers
• Weigh the risks and benefits accurately
• Decide ASAP after diagnosis
BUT THIS INVOLVES MATH!!!!! WE DIDN’T KNOW
THERE’D BE MATH!!!!!!
The very mention of math is enough to make many people hysterical
But oncologists communicate in numbers….
We figure out the odds of things happening
Figuring Out the Benefit of What We Dog gggg
First, we talk about the chance of cure without treatment. Let’s
say 80%
Then, we talk about the chance of
cure with treatment. Let’s say it’s 85%. The difference
between cure with and without treatment is the absolute risk reduction
(ARR). Here, it’s 5%
But we can also say how much risk is
reduced with treatment. If the risk was 20% without
treatment, and 15% with it, we’ve decreased the risk
by 25%! This is the relative risk reduction
(RRR).
a
Finally, we can figure out how many
need to be treated (NNT) for one person to benefit. We do this by taking the
number 1 and dividing it by the ARR.
Here, it’s 1/5%, or 20 need rx for one to
benefit
These are all ways of talking about the same thing.
Numeracy• An element of health literacy
• Basic math skills needed for health related activities such as timing, schedule and dosing of medications
• Numeric concepts needed to understand and act upon recommendations by health care providers
• Includes higher level tasks like estimation, probability, problem solving, understanding variability in error and measurement and risk assessment.
How Numerate Are You?
• A person taking a new drug called Havitol has a 1% chance of throwing up.
• If 1000 people take the drug, how many puke?
A person taking Havitol-XR has a 1 in 1000 chance of throwing up.
• What percent of people taking Havitol-XR hurl?
To determine if she will take Havitol, a woman flips a coin.
• If a person flips the coin 1000 times, how many times will it come up heads?
How numerate are you?• A person taking a new drug called Havitol has a 1% chance of
throwing up. If 1000 people take the drug, how many puke?
• ANSWER 10 puke
• A person taking Havitol-XR has a 1 in 1000 chance of throwing up. What percent of people taking Havitol-XR hurl?
• ANSWER 0.1% hurl
• To determine if she will take Havitol, a woman flips a coin. If she flips the coin 1000 times, how many times will it come up heads?
• ANSWER 500 times
How many did you get right?
70% said they were “good with numbers”
2% got all three questions right
Of 357 patients in an academic internal medicine clinic,
22% Below Basic: No more than the most
simple and concrete skill 33% Basic:can perform simple and
everday activities
The degree to which people can…
process and understand basic health information
needed to make appropriate health decisionsN=19,000 adults
500 female veterans were given one of four different questionnaires
that differed only in how the same information was presented
on the risk for death from breast cancer either with or without mammography
The women then reported their perception of risk and this was compared to the real risk
e
cer hy
f rriisk
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0 femmmmmmmmmmmmmmmmmmmmmaaaaaaaaaaaaaaaaaaaaale veterans were given onefoooooooooooooooooouuuuuuuuuuuuuuuuuuuuurr different questionnaireeeeeeeeeeeeeeeeeeeees
that diffffffffffffffffffffffffered only in how the sssssssssssssssamewas presenteddddddddddddddddddddd
thhhhhhhhhhhhhhhhhhhhh for death from bbbbbbbbbbbbbbbbbbbbbreastt canthhhhhhhhhhhhhhhhhhhhher wiiiiiiiiiith or without mammmmmmmmmmmmmmmmmmmmmmogggggggggggggggggggggrrrrrrrrrrrrraph
he wommmmmmmmmmmmmmmmmmmmmeeeeeeeeeeeeeeeeeeeennnnnnnnnnnnnnnnnn theen rrrrrrrrrrrrrrrrrrrrreeeeeeporteeeeeeeddddddddddddddddddddd their perception ofand ttttttthhhhhis wwasssssssssssssssssssss compaaaaaaaaaaaaaaaaaaaaared too the real risk
Numeracy Score
5.8%
8.9%
23.7%
40%%
innnnnnnnnnffffffffffoooooooooormation wwwwwwwwhhhhhhhhhhhhhhhhhhhhe rrrrrrrrrriiiiiiiiiisssssssssskkkkkkkkkk for deatthhhhhhhhhhhhhhhhhhhhheeeeeeeerrrrrrrr wwwwwwwwiiiiiiiiiiiiiiiiiiitttttttthhhhhhhh oooooooorrrrrrrr wwwwwwwwiiiiiiiitttttttthhhhhhhhhhhh
The more numerate, the more accurate
the perception of risk!
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But even the most numerate got it wrong 60% of the time
• N=2978 filled out an internet based survey
• Randomized to one of 6 ways of presenting the benefit of a statin drug, including RRR, ARR AND NNT
If participants received
relative risk reduction,
74% would take the drug
If participants received
absolute risk reduction or NNT, 51% would take
the drug
• N=62 first year med students from UNC-CH took the numeracy test
• Then were given info about risk of developing a hypothetical disease
• They were randomly assigned to 4 ways of looking at risk reduction: relative risk reduction, absolute risk reduction, number needed to treat, and a combination of the three
• They were then asked which of two drugs were more effective
77% got all 3 numeracy questions
correct
60% correctly interpreted
the data
40% of these smarty pants first year medical students did not correctly interpret
data on risk reduction
Effective Clinical Practice, January/February 2002
24 MDs, 12 PhDs, 4 nurses and 5 med students were asked:
• If a coin was flipped 1000 times, how many times would it come up heads?
• The chance of winning the lottery is 1%. If 1000 people bought a ticket, how many would win?
• The chance of winning a car is 1 in 1000. What percent of entrants win a car?
• If you have 5 mg warfarin pills and you take 7.5 mg daily, how many pills do you take every day?
• If you have 9 of the 5 mg pills left and take 7.5 mg daily, would you have enough for 1 week?
• Your INR should be 2-3, and today’s labs show your INR to 3.6, is your INR low, normal, or high?
53% got all six right27% got five right18% got four right
20% missed 2 of the numeracy questions
• N= 240 OB/GYNs surveyed
• 66% answered all three numeracy questions correctly
• N= 235 MDs surveyed at at teaching hospitals
• Were give the same outcome of a drug, either as the ARR or the RRR, and asked whether they would recommend the drug.
• 49% indicated a stronger likelihood of recommending the drug based on RRR vs 4% for ARR.
203 Med Students
They were then asked if they would recommend chemotherapy
When given relative risk reduction70% would recommend chemotherapy
to the woman with a 2.9 cm tumor
When given absolute risk reduction45% would recommend chemotherapy
to the same person
Math anxiety was a significant predictorof decreased cognitive function
Am I going to
die?
Will I see my kids grow up? Can I afford this?
Did I do something to bring this on?
Will I get sick?
Will there be pain?
Why would a cancer diagnosis make anybody anxious?
Will there be math?
Does anxiety affect decision
making?
It sure does.
• Fear and anxiety share the same neurobiological circuitry.
• Anxiety fuels interpretation of stimuli as a threat. (Help!)
• Anxiety increases attention to negative choice options.
• Ambiguous options are interpreted as negative. When evaluating the outcome possibilities of future life events, anxious individuals unrealistically judge negative outcomes as more likely than positive ones. (When in doubt, it’s awful!)
• Anxiety fuels risk aversion (I want SAFE). They will do everything they can to avoid a negative outcome.
• The neural systems enabling one to alter these maladaptive decision processes are difficult to engage when anxious.
Why do people choose contralateral
mastectomy?
BCT rates are dropping
Mx rates are rising
Bilateral Mx rates are increasing (2-11%) despite a drop in contralateral breast cancer (.5%/yr) BBilateral Mx rates are increasini g (2-11%) despite a ddrop
Of 123 women who had bilateral mastectomy for a unilateral breast cancer…
• 95% chose CPM for peace of mind
• 18% said women who get CPM live longer than those who don’t
• 94% chose CPM to extend survival
• 85% chose CPM to prevent spread to other sites in the body
• 87% worried that their breast cancer would relapse in the future
• 67% said CPM would reduce their risk by “a lot”
Current risk of contralateral breast cancer…
5%
d thaattttttt their breast cancer wouuuuuuuu
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They understand objectively that CPM doesn’t extend life.
But on an emotional level they don’t think that conclusion
applies to them.
So what have we
learned so far?
Patients frequently lack the skills
to make a truly informed decision
Doctors often lack the skills
to make a truly informed decision
Anxiety affects the abilityto view things objectively
Maybe we should call it
sorta kinda semi-informed decision
making!
Can we make things better?
• Keep it simple (avoid relative risk reduction, e.g.)
• Eliminate non-essential information
• Frame things effectively (1 in 10 is easier to understand than 10 in 100)
• Confirm comprehension
• Use visuals
Does Adjuvant Online help?
• Adjuvant Online! (AO!) is a risk prediction model designed to make decision making easier
• Two thirds of oncologists in the US and UK use the estimates from AO! with patients.
• How well did it work to help patients get an accurate understanding of their breast cancer risk?
?
?
DDDDDooooeeeessss AAAAddddjjjjjuuuuvvvvaaaannnntttt OOOOnnnnnnnnlllliiiinnnneeee hhhheeeellllpppp?????
• AdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdjujujujuujujujujujujujujjujujjj vavavavavavavavavavavavavavavavaavavaantntntntntntntnntntntntntntntntntntntnt OOOOOOOOOOOOOOOOOOOOnlnlnlnlnlnlnnlnlnlnlnnnlnnnlnnlinininininininnnnininininininnninne!eeeeeeeeeeeeeee (AO!) is a risk prediction modeldedededesisisisigngngngnedededed ttttoooo mamamamakekekeke ddddececececisisisisioioioionnnn mamamamakikikkikkkingngngng eeeeasasasasieieieierrrr
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••••• HoHoHoHowwww wewewewellllllll ddddidididid iiiitttt wowowoworkrkrkrk ttttoooo hehehehelplplplpppppp ppppatatatatiieieieientntntntssss gegegegeggggggggggggg tttt anananan accuratetttttt u ddndddddddddddddddddersttttttttttttttandidddididididddidddidididdidd ng offfffffffffffffff hththhththththththhthhhthhhhtht iieiir bbbbbbbbbbrbbbbbbbbb ea tsttttttttt caaanaaaaaaa cer risk?
• 48 pts with low risk breast cancer were randomly assigned either Adjuvant or a pamphlet to use with their oncologist to understand the risk of their cancer and the treatment
• End points:
• Accuracy of survival estimates
• Was accuracy associated with treatment choice?
• After controlling for accuracy, did Adjuvant help with treatment choice?
• 48 pts with low risk breassssssssssssassigned either Adjuvantttttttttttheir oncologist to undersssssssssssscancer and the treatmentttttttttt
• End points:
AAAAAAAAAAAccuracyc offffffffff sus rviiiiiiiiv llllllllal eess
Accuracy of prognosis: 57% Adjuvant 25% Pamphlet
But even with AO!, 43% got their
prognosis wrong
eeeeeeeestimates
ccccee
Pts with more accurate estimate of their prognosis were less likely to choose
adjuvant therapy 62% vs 89%
Hey! Dr. Know-It-Some! Remember me???
She is a PhD in food science and tells me she wants any and all information regarding the side effects of treatment
So I take a deep breath and…
• Tell her the chance of cure without further treatment
• Tell her the chance of cure with treatment
• Talk about the advantage and disadvantages of anything I can offer
• And ask her to tell me what she just heard and what she wants to do
And she says… Okay, my chance of cure
without anything else is about 70%. I’d like to improve on that.
nddddd sss e sa ssss…………I know we’ll get an
Oncotype, but I assume it will come
back intermediate
risk
Because the chemo benefit isn’t
clear for intermediate risk, I don’t think the
side effects justify the risks
p
With adjuvant endocrine rx, I can reduce my risk of
relapse probably to 10-15%ntermediate
’t thinctsri
So after RT, I’ll come back to see
you and we’ll further discuss the side effects
and we’ll figure out if they’re worth the
benefit
While I reduce the risk by over 50%, that still means 20 have to be treated for one to
benefit
Wow! What are the odds of that?
(Rim Shot)
• Carolyn Bloom
• Kevin Edelman
• Becky Reed
• All my great VPCI and MNO colleagues
• Lulu Bloom DuCett