Biases & Mistakes Biases & Mistakes in Epilepsy Carein Epilepsy Care

Orrin Devinsky, M.D.NYU Langone Epilepsy Center

Biases in Epilepsy Care: Biases in Epilepsy Care: Lessons of Behavioral Lessons of Behavioral

EconomicsEconomics

Diagnostic Bias Prospect Theory Law of Small Numbers Status Quo Bias Availability Heuristic

Biases in Medicine: Biases in Medicine: Kahneman & TverskyKahneman & Tversky’’s s

LessonsLessons

Loss aversion Anchoring Framing What You See is All There Is

What do NBA coaches, What do NBA coaches, mothers and doctors have mothers and doctors have in common?in common?

The Diagnostic Bias 1st round v. 2nd round choice Diagnosis to doctor = child to mother

Reliance on prior diagnosis Failure to consider other disorders

Convulsive syncopeNonepileptic psychogenic

seizures Failure to consider diagnostic changes

Prospect TheoryProspect Theory

Decisions about alternatives with risk where final outcome risks are known, people decide on potential values of losses or gain

Risk averse (insurance policy) Risk acceptance (lottery ticket)

Prospect Theory: Prospect Theory: Epilepsy CareEpilepsy Care

Felbamate is too dangerous Risk of death is <1/10,000

Surgery is too dangerous – <1/1500

Refractory epilepsy is ok, it is what we are used to Yearly risk of MVA in 1/8000 Yearly risk of SUDEP in patients with refractory

epilepsy: >1/500 Yearly risk of other epilepsy related mortality in

patients with refractory epilepsy: >1/500

Availability HeuristicAvailability Heuristic

If you can think of it, it must be important Mental Shortcut: ease of example coming

to mind = value to make judgment about probability of event

News of danger – people worry about rare causes of illness or death that receive media attention (9/11 and air travel)

Letter K – first letter or third letter in average English word? (2x difference)

Availability Heuristic: Availability Heuristic: Epilepsy CareEpilepsy Care

Valproic acid (Depakote) is a common cause of liver disease

Lamotrigine (Lamictal) is a common cause of life-threatening rash

Patients & families are driven by prior experience Good: 10 drugs don’t work, ?11th Bad: someone on the web told me…

QOL & Availability QOL & Availability Heuristic: Heuristic:

A Different ViewA Different View

QOL - Defined by patient not MD Should patient’s perspective be

filtered through “objective medical lens”? - NO

QOL is about listening, changing perspective, and using the patients’ view as ultimate measure of outcome

QOL: Clinical QOL: Clinical RelevanceRelevance

QOL issues most relevant to chronic disorders, problems beyond disease symptoms

Hypertenstion – -blockers v. ACE inhibitors (Experts wrong!)

Epilepsy is a paradigm of a QOL disorder: seizures are infrequent, AED effects, comorbid disorders (depression, migraine) & psychosocial problems are often chronic

Law of Small NumbersLaw of Small Numbers

Hasty generalizations from a few examples

Initial set of data is usually biased Scientists understand power and

statistics in their discipline, but often forget it when they think outside their discipline

Humans are Anecdote Humans are Anecdote DrivenDriven

We evolved to understand individual instances very well, not statistics

A moving story about a castaway dog or sick children v. a genocide of ~800k Would you give more for a dog or 100 sick

kids? Rwanda v. OJ Simpson – media coverage

Vaccines cause autism (NO!)

Humans are Anecdote Humans are Anecdote DrivenDriven

Sabril (vigabatrin) can cause blindness Felbatol (felbamate) can be deadly People can become vegetables after

spinal taps You only need to hear about one bad

case…and it doesn’t have to be true Need to examine the evidence

Failure to Understand Failure to Understand NumbersNumbers

The medical literature is very confusing, even for scientists and doctors

Few doctors and fewer patients have formal statistical training

The Monte Hall problem AED/blood count/liver tests and Cancer

Screening – America makes political not wise choices

Status Quo BiasStatus Quo Bias

Doctors and patients fall victim Doctors accept previous diagnoses Doctors advocate treatments that

are ‘accepted’ but not ‘proven’ Patients accept poorly controlled

seizures and/or side effects Patients accept ‘communal

experience’ although unproven/anedotal

We get used to what We get used to what we get used towe get used to

What do these all have in common? Lottery winners Quadriplegics Farmers whose roosters rape chickens People who eat mediocre blueberries Parents of kids with Lennox-Gastaut

Syndrome

Loss AversionLoss Aversion

People prefer to avoid losses more than they seek equal gains

Roughly two-fold Endowment effect: people value

something they own than something of identical value Duke tickets

Loss Aversion: Epilepsy Loss Aversion: Epilepsy CareCare

Seizure control is the loss The existing drug regimen is safety –

the devil you know Gamble: seizure freedom/stable level of

incomplete control v. greater alertness, memory, mood, bone health?

Loss Aversion: Epilepsy Loss Aversion: Epilepsy CareCare

How fearful are you of a side effect in a new drug versus an existing one?

Doctors like to add medicines more than they like to take them away The gabapentin story

PBPB

30 yo woman, refractory complex partial seizures

Any side effects? No! Converted from phenobarbital to

carbamazepine (Tegretol, Carbatrol) Boss observed dramatic improvement in

mood, memory and mental processing speed and ‘intelligence’

Errors in Assessing RiskErrors in Assessing Risk Surgery is too dangerous

Living with chronic epilepsy can be dangerous

Changing medications is too risky Change can be risky; No change can be risky

The grass is browner on the other side Breakthrough seizure

Living with chronic side effects has risks We accept the negatives we think we know but

fear the change to make them better Do no harm, but judiciously assess risk

AnchoringAnchoring

Over-reliance on a specific piece of information

Our decisions are tied to arbitrary anchors

Dan Ariely – write down last 2 digits of your SS#; now lets auction wine or chocolate

Attentional anchor – who is happier? Californians or mid-Westerners?

AnchoringAnchoring

Patients and doctors often allow one piece of information to dominate their decision on a topic that is complex What we heard last about a drug or

treatment Nickname – Dopamax Single side effect – weight gain

(Valproic acid)

Frames & FramingFrames & Framing

Frames – scheme of interpretation using stereotypes, anecdotes and accepted ‘norms’ that people use to understand and respond

Framing – how information is packaged dramatically influences how we respond to it. Presenting the same data in different frames leads to very different interpretations.

Frames & Framing: Frames & Framing: Epilepsy CareEpilepsy Care

Many patient see memory problems as primarily due to medications when they are often an effect of epilepsy

Framing – 80% of children on levetiracetam (Keppra) have no significant behavioral problems v. 20% of children on levetiracetam have significant behavioral problems

Failure to Understand Failure to Understand FramingFraming

“Surgery is 99.95% safe” is very different than “Someone died from surgery” or “1 in 1500 die”. Substitute benign brain tumor for epilepsy

surgery Mentally invert presentations to better

understand pros and cons Patients must trust their doctors, but they must

also assess their doctor’s bias and their own The neurosurgeon, the radiation oncologist &

the neuro-oncologist

What You See is All There Is What You See is All There Is (WYSIATS)(WYSIATS)

People make decisions based on limited data by using available information and ignoring information that is not available

In Epilepsy: assume we understand causes of seizures when we may only have 10-20% of the data

Missing Mood Disorders Missing Mood Disorders

All epilepsy patients at increased risk Patients must tell; doctors must ask –

both often fail Refractory epilepsy

Greater contributor to impaired Quality of Life than seizures

Depression in up to 50% Suicidal ideation - 20% in past 6 mos

Majority are untreated

Two Great Lies in Two Great Lies in EpilepsyEpilepsy

Seizures don’t hurt the brainThey cause structural and functional impairment that can progress over time

Seizures are never fatalSUDEP

Sudden Unexplained Sudden Unexplained Death Death

in Epilepsy (SUDEP)in Epilepsy (SUDEP)General population (2–3)

Epilepsy incidence population (5)

Epilepsy prevalence population (7)

Patients in clinical trials (30–50)

Patients undergoing vagus nerve stimulation (41)

Patients referred to epilepsy centers (50–60)

Surgical candidates (90)

Surgical failures (150)

Missing The Big Picture Missing The Big Picture Focus on person, not diagnosis

Listen, beyond the words to feelings See their world: situations influence health Look patient in the eyes Speak with family and friends

Therapies are limited by medical box Therapists - cognitive, psychological, etc Pragmatic approaches (sometimes key!)

Compliance Sleep hygiene Memory lists

The Dangers of The Dangers of Expert ConsensusExpert Consensus

MRI offers no real advantage over CT in epilepsy diagnosis - 1986

Ketogenic diet is not effective - 1990 Felbatol (felbamate) is extremely safe – 1993

Experts convince themselves, other doctors and patients

Demand evidence or humility

Failure to ReassessFailure to Reassess

Disorders change and evolve New situational factors arise Need to keep a fresh perspective Need to cast a broad differential

diagnosis and consider a broad therapeutic strategy

What was is an excellent but sometimes dead-wrong indicator of what is

Doctors and Patients Doctors and Patients Move in PacksMove in Packs

Doctors are influenced by peers, thought leaders, marketing – they are as susceptible to status quo, texts (eg, JME, absence) framing as are patients

Doctors in different medical centers, cities, and regions have different practices

Patients strongly influence each other – support groups, internet, etc

Failure to be HumbleFailure to be Humble

Most people don’t enjoy admitting that they don’t know something

Doctors are expected to have answers, to have therapies, and if they are honest, people go to other doctors or alternative therapists – catch 22

Tell a white lie or admit ignorance?

Common Errors in Common Errors in TherapyTherapy

Wrong diagnosis Wrong medication selection Failure to use medications systematically

Start low, go slow Consider time of doses v. seizure & side effects

Benign Rolandic Epielspy Consider strategies to reduce side effects

For dizziness – oxcarbazepine (Trileptal) after solid breakfast, not empty stomach

Failure to document changes carefully Nonadherence (noncompliance)

Fatigue: Diagnosis Fatigue: Diagnosis and Causation and Causation

Premature exhaustion in mental or physical activities, weariness, lack of energy

Common in epilepsy patients AEDs Other drugs (eg, psychiatric drugs) Seizures

Epilepsy wave activity Depression Sleep disorders

Final ThoughtsFinal Thoughts

Things should make sense – separate emotional/gut and rational/reflective

Understand what you do and why Be an active partner in care Be skeptical Be positive, think healthy