The document discusses common mistakes made in epilepsy care, including diagnostic bias, failure to consider mood disorders or how disorders may evolve over time, overreliance on prior diagnoses, and failure to consider quality of life from the patient's perspective rather than just medical factors. It also notes how doctors and patients can be influenced by anecdotes rather than statistics and the importance of humility, open-mindedness, and reassessing risks and benefits over time based on new evidence rather than established viewpoints.

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

2. What do NBA coaches, mothers and doctors have in common? The Diagnostic Bias 1 st round v. 2 nd 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

3. 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

4. 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

5. Not So Benign Epilepsy “ Benign Epilepsies” Yes or No? Absence Epilepsy Childhood (5-9 yo) vs. Adolescent (10-14 yo) Benign Occipital Epilepsy Benign Rolandic Epilepsy

6. Absence Epilespy: A Wolf in Sheep’s Clothing 56 Absence Epilepsy v. 61 Juvenile Rheumatoid Arthritis patients Wirrell et al, Arch Pediatr Adolesc Med 1997;151:152-158 Remission 57% of absence epilepsy and 28% of JRA patients. Absence epilepsy - increased academic, personal, and behavioral disorders (p<.001) Ongoing seizures - poor prognosis Instead of saying ‘everything is fine’, we need to find ways to improve outcome

7. Circular Reasoning: Benign Rolandic Epilepsy is Benign The “Party Line” 99% outgrown No cognitive or behavioral problems Seizures easily controlled Reality Are thousands of spikes each night really benign? Increased attention and language disorders Some are not so easy to control: clusters, aggressive course, poor AED response

8. Sarah Mild epilepsy; considered ‘benign’ Onset at age 4; off meds - age 9 Attention deficit disorder - age 6 Reading comprehension problems at age 8 Problems persisted after meds were stopped Was there a missed opportunity??

9. Juvenile Myoclonic Epilepsy (JME) is Lifelong: ?Wrong! JME: an idiopathic (genetic) epilepsy with myoclonic as predominant seizure type; +/- absence, tonic-clonic A lifelong disorder requiring AEDs - standard teaching in current texts Except that it is wrong - 25 year followup: one-third are seizure free off meds with no seizures or only myoclonus (Camfield & Camfield)

10. 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

11. 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

12. 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

13. 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

14. Fear of Failure: Loss Aversion People are loss averse ~ 2:1 ratio, irrationally avoid loss - neuroeconomics People value what they have more than what they don’t have – Duke tickets Medications? Seizure control? The devil you know… Doctors like to add medicines more than they like to take them away The gabapentin story

15. 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 The neurosurgeon, the radiation oncologist & the neuro-oncologist

16. 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

17. 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!)

18. 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

19. 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 often makes the politically correct choice, not the best patient care choice

20. 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?

21. Common Errors in Therapy Wrong diagnosis Wrong medication selection Failure to use medications systematically Start low, go slow Consider time of doses v. seizure 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)

22. 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

23. 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

24. 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)

25. QOL: 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

26. QOL: Clinical Relevance 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 disorders: seizures are infrequent, AED effects, comorbid disorders (depression, migraine) & psychosocial problems are often chronic

27. Stay Focused Positively Learn to reduce stress Use your mind Exercise