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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he wommmmmmmmmmmmmmmmmmmmmeeeeeeeeeeeeeeeeeeeennnnnnnnnnnnnnnnnn theen rrrrrrrrrrrrrrrrrrrrreeeeeeporteeeeeeeddddddddddddddddddddd their perception ofand ttttttthhhhhis wwasssssssssssssssssssss compaaaaaaaaaaaaaaaaaaaaared too the real risk

Numeracy Score

5.8%

8.9%

23.7%

40%%

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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%

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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?

?

?

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• AdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdAdjujujujuujujujujujujujujjujujjj vavavavavavavavavavavavavavavavaavavaantntntntntntntnntntntntntntntntntntntnt OOOOOOOOOOOOOOOOOOOOnlnlnlnlnlnlnnlnlnlnlnnnlnnnlnnlinininininininnnnininininininnninne!eeeeeeeeeeeeeee (AO!) is a risk prediction modeldedededesisisisigngngngnedededed ttttoooo mamamamakekekeke ddddececececisisisisioioioionnnn mamamamakikikkikkkingngngng eeeeasasasasieieieierrrr

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• 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

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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