Biases & Mistakes in Epilepsy Care

1. Biases & Mistakes in Epilepsy Care Orrin Devinsky, M.D. NYU Langone Epilepsy Center

2. Biases in Epilepsy Care: Lessons of Behavioral Economics • Diagnostic Bias • Prospect Theory • Law of Small Numbers • Status Quo Bias • Availability Heuristic

3. Biases in Medicine: Kahneman & Tversky’s Lessons • Loss aversion • Anchoring • Framing • What You See is All There Is

4. What do NBA coaches, mothers and doctors have 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 syncope Nonepileptic psychogenic seizures • Failure to consider diagnostic changes

5. Prospect 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)

6. Prospect Theory: Epilepsy 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

7. Availability 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)

8. Availability Heuristic: Epilepsy 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…

9. QOL & Availability Heuristic: A 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

10. QOL: Clinical Relevance • QOL issues most relevant to chronic disorders, problems beyond disease symptoms • Hypertenstion – b-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

11. Law 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

12. Humans are Anecdote Driven • 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!)

13. Humans are Anecdote Driven • 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

14. Failure to Understand Numbers • 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

15. Status 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

16. We get used to what we 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

17. Loss 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

18. Loss Aversion: Epilepsy Care • 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?

19. Loss Aversion: Epilepsy Care • 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

20. PB • 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’

21. Errors 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

22. Anchoring • 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?

23. Anchoring • 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)

24. Frames & 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.

25. Frames & Framing: Epilepsy 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

26. Failure to Understand Framing • “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

27. What You See is All There Is (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

28. 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

29. Two Great Lies in Epilepsy Seizures don’t hurt the brain They cause structural and functional impairment that can progress over time Seizures are never fatal SUDEP

30. Sudden Unexplained Death 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)

31. 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

32. The Dangers of Expert 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

33. Failure 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

34. Doctors and Patients Move 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

35. Failure 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?

36. Common Errors in Therapy • 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)

37. Fatigue: Diagnosis 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

38. Final 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