COGNITIVE BEHAVIORAL THERAPY FOR CHILDREN WITH PANDAS/PANS

1. COGNITIVE BEHAVIORAL THERAPY FOR CHILDREN WITH PANDAS/PANS Brad Riemann, Ph.D. Clinical Director, OCD Center and CBT Services Rogers Memorial Hospital

2. BRAD RIEMANN • Clinical psychologists. • Clinical Director, OCD Center at Rogers Memorial Hospital. • Chair, Clinical Advisory Committee of IOCDF. • Member of Scientific Advisory Board of IOCDF. • Member of Clinical Advisory Board of ADAA.

3. INTRODUCTION • Overview of cognitive behavioral therapy (CBT) for obsessive compulsive disorder (OCD). • Components of CBT. • Keys to making exposure successful. • Thought challenging. • Assessment. • General outcomes. • Role of CBT for PANDAS/PANS. • Role of family in treatment. • Storch et al., 2006.

4. Rogers Memorial Hospital OCD Center • Private, free standing nonprofit psychiatric facility. • 7th largest behavioral health care system in U.S. • Levels of care for child and adults. • Intensive outpatient (12 hours per week). • Day treatment (20 hours per week). • Residential (30 hours per week).

5. CBT FOR OCD • CBT, alone or in combination with sertraline, is first line treatment for pediatric OCD (POTS Team, 2004).

6. CBT COMPONENTS • Behavior Therapy (Exposure and Ritual Prevention; ERP). • Key element to effective treatment for OCD. • Meyer (1966). • Based on the principle of habituation. • Habituation is the decrease in anxiety experienced with nothing but the passage of time. • Cognitive restructuring (Thought Challenging). • Targets errors in thinking. • Use as an addition to ERP (85% - 15% split).

7. EXPOSURES AND KEYS TO SUCCESS • Exposure is placing an individual in feared situations (targets the obsessions). • Needs to be prolonged enough to lead to within trial habituation (at least 50% reduction in anxiety). • Needs to be repetitive enough to lead to between trial habituation (until causes minimal to no anxiety). • Needs to be graduated (increases compliance). • We start people off in their 3’s (just below midpoint of 0-7 scale).

8. RITUAL PREVENTION • Blocking the typical response or ritual before, during, and after exposure so habituation can take place (targets compulsions).

9. THOUGHT CHALLENGING • Global targets. • Increasing tolerance of uncertainty. • Decreasing perceived need to control thoughts (e.g., suppression of unwanted thoughts). • Decreasing the perceived importance of thoughts. • Specific targets. • Probability overestimation errors (e.g., getting HIV from touching a door handle). • Catastrophizing errors (e.g., someone in men’s room didn’t wash their hands after using toilet).

10. ASSESSMENT • Yale-Brown Obsessive-Compulsive Scale (Y-BOCS; Goodman et al., 1989). • 60 symptom checklist. • Self-report version. • Childhood version (CY-BOCS). • 10 item severity rating scale (0-4). • 5 questions regarding obsessions. • 5 questions regarding compulsions. • Mean score for OCD = 24.

11. YBOCS • 0- 7 = subclinical. • 8-15 = mild. • 16-23 = moderate (16 trial cut-off). • 24-31 = severe. • 32-40 = extreme.

12. TREATMENT STEPS FOR ERP • CYBOCS symptom checklist. • Yes or no. • Detailed information gathering. • Generate lists of things can not do as a result. • Create specific, individualized exposure exercises for each area. • Rate each specific exercise on a “subjective units of distress scale” (SUDS; Rogers uses 0-7 scale). • Create exposure hierarchy. • Assign ERP assignments.

13. OUTCOMES IN GENERAL • Effective (80-85% improvement rates; Foa et al., 1996a) and robust (low relapse rates, Foa et al., 1996b). • “Only” side effect is increased anxiety during treatment (can manage by conducting graduated exposure). • Quick improvements (many after first week of treatment).

14. THE ROLE OF CBT IN PANDAS/PANS? • Reduce acute impairment and symptomology. • Prepare and empower parents and child for potential future symptom exacerbations. • Not a lot of data as of yet (larger samples being collected).

15. HOW CBT DIFFERS IN PANDAS/PANS • It generally does not… • However, you have to consider potential factors: • Symptom severity. • Family factors. • Potential for future symptom exacerbations.

16. SYMPTOM SEVERITY • Symptoms may be extremely severe shortly after an exacerbation/onset of PANDAS/PANS. • Determine realistic timing of intervention. • May have to move more slowly through hierarchy. • May have to start lower than 3’s.

17. FAMILY FACTORS AND ACCOMMODATION • Dramatic onset of symptoms changes family functioning considerably. • How are the parent/family doing? • As a result “ family accommodations” may be made in an attempt to cope with and reduce symptoms. • Unfortunately has opposite effect (makes things worse). • Treatment model is to train “parents as therapists”. • Address family accommodation in the course of treatment. • Always include parents in session.

18. POTENTIAL FOR FUTURE EXACERBATIONS • Although good probability for response, symptoms may return. • CBT provides family with a tool set for addressing such occurrences. • Empowering families. • Able to sort out what to do next should symptoms return. • May reduce severity of future episodes.

19. OUTCOME DATA • Case report of CBT for rapid onset pediatric OCD of the PANDAS phenotype in a six-year-old boy. (Storch et al., 2004). • Over a one-week intensive CBT protocol, marked symptom reductions measured by the CY-BOCS were found (pre-treatment of 34 (extreme), post-treatment of 8 (low mild); treatment gains were maintained for one-year. • Considerable clinical experience from several centers around country (Rogers, USF).

20. STORCH ET AL. (2006) • PARTICIPANTS. • Seven children with PANDAS related OCD. • Aged 9-13 years. • 4 males, 3 females. • CY-BOCS total score ≥ 16. • Stable on all medication at least 8 weeks prior to study.

21. Subject Age/Gender Primary Obsessions Primary Compulsions 1. 10-year-old female Contamination fears Aggressive thoughts Somatic Washing/Cleaning Checking Ordering/arranging Reassurance seeking 2. 10-year-old male Contamination fears Aggressive thoughts Sexual thoughts Washing/Cleaning Repeating Counting Reassurance seeking 3. 12-year-old male Contamination fears Washing/Cleaning 4. 11-year-old female Contamination fears Aggressive thoughts Magical thoughts Washing/Cleaning Checking Ordering/Arranging Reassurance seeking 5. 13-year-old male Contamination fears Aggressive thoughts Washing/Cleaning Checking Ordering/ Arranging 6. 9-year-old male Contamination fears Somatic fears Washing/ Cleaning Checking Ordering/Arranging Reassurance seeking 7. 11-year-old female Contamination fears Washing/Cleaning Checking Ordering/arranging Reassurance seeking Clinical Presentation

22. PROCEDURE • Assessments were conducted at three time points: • Pre-treatment. • Post-treatment. • 3-month follow-up. • All patients received 14 90-minute CBT sessions over 3 weeks (abbreviated intensive outpatient).

23. RESULTS

24. CY-BOCS Reductions for Each Child

25. RESULTS (continued) • Using very strict criteria, 86% (6/7) were significantly improved at post-treatment assessment and 50% (3/6) at follow-up. • 71% (5/7) no longer met criteria for OCD at post-treatment and 50% (3/6) at follow-up.

26. TAKE HOME POINTS • CBT should be part of the treatment of PANDAS/PANS. • Despite etiological factors, rituals still reduce anxiety which reinforce further symptoms. • Very few doubt that OCD is caused by a neurobiological abnormality yet CBT works very well for it. • Family involvement is huge – parents as therapist model. • Empowers families. • May reduce impact of future bouts. • Can use other CBT interventions to treat other symptoms (e.g., habit reversal training for tics).

27. THANK YOU.