Evidence-Based Approaches to the Treatment and Prevention of Pediatric Obsessive-Compulsive Disorder in Educational and Residential Settings: Real World

Evidence-Based Approaches to the Treatment and Prevention of Pediatric Obsessive-Compulsive Disorder in Educational and Residential Settings:

Real World Challenges and Successes

Andre P. Bessette, Ph.D.Clinician & Director of Day Program Services

The Learning ClinicBrooklyn, CT

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Purpose:

To introduce mental health and educational professionals and paraprofessionals to the construct of pediatric Obsessive-Compulsive Disorder (OCD), and especially as it is encountered in our educational and residential settings.

To learn to identify and understand the many complex challenges and functional impairments of pediatric OCD as it is encountered in these educational and residential settings.

To develop the basic skills to help structure multisystemic (e.g. clinical, familial, school, environmental, community) interventions, as well as preventive/ resilience-building supports to help students manage this debilitating condition and lead healthy, productive lives.

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Introduction to OCD and Pediatric OCD in Particular

Obsessive-Compulsive Disorder (OCD) is recognized as a very serious, debilitating, socially stigmatizing neurobehavioral condition. It is often referred to as a “silent epidemic” because of the embarrassment and shame associated with it and individuals’ attempts to hide it.

OCD affects 1.8% to 2.5% of the general U.S. population (Weissman et al., 1994),

and anywhere from 1% to 4% of the child and adolescent population in this country (Douglass, Moffitt, Dar, McGee, & Silva, 1995; Flament et al., 1988; Valleni-Basile, Garrison, & Jackson, 1994).

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Introduction (contd.)

However, given our nascent diagnostic precision and individuals’ tendency to underreport, it is likely that these rates are considerably higher.

Of OCD cases recognized in adults, 80% experience symptom onset before the age of 18 (Pauls, Alsobrook, Goodman, Rasmussen, & Leckman, 1995) and some may even demonstrate clear OC symptoms as young as 3 years.

Estimates as to the social and economic costs of treating OCD in 1990 hover around $8.4 billion (DuPont, 1994).

However, the true costs of pediatric OCD are most apparent in the formative social, academic, family, developmental opportunities, and related personal potential, that a majority of these individuals may never fully experience (Piacentini, Bergman, Keller, & McCracken, 2003).

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DSM-IV-TR Diagnostic Criteria

Obsessive-Compulsive Disorder (OCD) is an anxiety disorder.

Largely chronic condition involving intrusive thoughts, impulses, or images (i.e. obsessions) that an individual experiences as inappropriate and undesired, and which lead to intense anxiety and distress, and repetitive behaviors that a person feels driven to carry out (i.e. compulsions) in an effort to neutralize the obsessions and reduce the anxiety, distress, or sense of perceived threat.

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Two core features of compulsions are that:

1) They can be physical acts or mental rituals (e.g. counting, praying, prioritizing) meant to reduce distress, prevent a threatening event, or atone for a transgression, and

2) These acts are not logically or functionally related to the situation they are intended to address (e.g. touching a railing 7 times to ward off possible intruders as opposed to repeatedly checking a stove to ensure that it has been turned off).

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4 key criteria that are necessary to make the diagnosis of OCD are:

1) At some point the individual demonstrates at least some insight in recognizing these obsessions and compulsions as excessive or unreasonable (however, this can vary for youngsters depending upon developmental level)

2) These behaviors are ego-dystonic, or experienced as unacceptable and distressing (this can also vary somewhat with younger individuals),

3) They consume an inordinate amount of time and energy (sometimes three to four or more hours per day)

4) These experiences thus significantly impair social, occupational, family, and/or academic functioning.

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Some Examples of OCD, Particularly in Youngsters

Handwashing Stove checking Ordering toys/belongings- even thoughts (example of Allen) Repetitive threshold crossing Ritualistic tapping Counting Repetitive praying Spinning and other gestures Avoiding, altering, or separating foods Most common obsessions: concerns involving family catastrophes,

hoarding, contamination, and sexual, somatic, and religious preoccupations (Geller et al.,1998)

Most common compulsions: washing, repeating, checking, ordering, counting, hoarding, and touching.

Children tended to present with a high frequency of compulsions not preceded by obsessions.

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Comorbidity- What tends to come with the OCD territory

OCD rarely emerges alone. In fact, as many as 70% of OCD individuals present with at least one co-

occurring, or comorbid, disorder such as a tic disorder (including Tourette’s Disorder), Attention-Deficit Hyperactivity Disorder (ADHD) (see Geller et al., 2002), Oppositional-Defiant Disorder (ODD), Major Depressive Disorder, and other anxiety disorders such as phobias and Generalized Anxiety Disorder (Swedo et al., 1989).

Pediatric study in India (Reddy et al., 2000): Comorbidity rate of 69%. The most common accompanying conditions were disruptive behavior (i.e. acting out) disorders (22%), mood disorders (20%), other anxiety disorders (19%), and tic disorders (17%).

930 individuals (Douglass et al.,1995): Most common comorbid conditions were depression (62%), social phobia (38%), and substance dependence (alcohol 24% and marijuana 19%).

Study of over 400 OCD patients (Yaryura-Tobias et al., 2000): . 32.2% developed at least one other Axis I disorder (i.e. clinical disorders such as anxiety and depression).

Order that these conditions tended to emerge over time: First: another anxiety disorder. Second: a mood disorder. Finally: eating disorder, or a tic disorder.

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Prevalence- including region

Fairly broad prevalence range:

UK: 0.25%

Germany: 0.5%

Canada: 0.6%

USA: 1% to 4%

Denmark: 1.33%

Israel: 3.6%

Japan: 5%

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Gender

Some studies have found a slight male predominance.

More commonly, however, the empirical evidence

indicates that no significant gender difference exists with regard to prevalence but that gender differences may

be more apparent in symptom profiles

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Functional Impairment While the symptoms of pediatric OCD may be obvious and clearly debilitating in and of

themselves, their impact on these youngsters’ psychosocial functioning can be devastating.

Disruptions in social adjustment, family relationships, academic performance, extracurricular opportunities, developmental tasks, occupational potential (especially in older adolescents), and one’s sense of identity can be devastating and chronic if left untreated.

Likely child presentation to teachers: defensive, inattentive, stubborn, unmotivated, or oppositional, and thus may be inappropriately treated as such, drawing undue consequences.

Excessive time spent engaging in rituals at school may be seen as bizarre or “crazy” and can attract social ostracism and ridicule, resulting in the youngster’s self-isolation and further social maladjustment.

In the home, “odd” and time-consuming rituals can be disruptive and stressful for a family, especially when siblings and parents have their own lives to live.

Family members commonly become involved in the rituals. In such situations, disruptions in family activities, loss of friendships, financial problems,

marital discord, and sibling conflict have been found (Cooper, 1996). Children are perhaps more aware of the impact of their OCD condition on others than we

think. Given sufficient exposure to such shaming experiences, it is not uncommon for them to

develop a very negative self-concept built around these perceived “failures”. This could reinforce the notion that the world can be a threatening place, further erode their self-efficacy, and thus render these youngsters at risk for further problems such as depression, anxiety, or externalizing behaviors.

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Functional Impairment (contd.)

151 children and the range and degree of the impact of OCD on school, social, and family functioning (Piacentini et al., 2003).

Most common parent concerns: Concentrating on schoolwork (47%) Doing homework (46%) Preparing for bed at night (42%). Children reports: Concentrating on schoolwork (37%) Doing homework (32%) Doing household chores (30%) Mastering key developmental tasks (e.g. object constancy, individuation,

autonomy and agency, perspective-taking, moral reasoning, and the capacity for emotional investment in relationships) can be seriously impacted.

This may lead to subsequent social, academic, vocational, and family dysfunction even after symptoms have resolved.

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Differential Diagnosis

More developmentally or culturally-common obsessions and rituals: Such behaviors, however odd they may seem, tend to be volitional, manageable, temporary, innocuous, and do not cause excessive distress or functional impairment (e.g. Leonard, Goldberger, Rapoport, Cheslow, & Swedo, 1990).

Examples: childhood rituals, magical beliefs superstitions, and self-soothing compulsions outlined previously in the overview of pediatric OCD, that may remit over time or become incorporated into a somewhat functional lifestyle.

However, can such “normal” rituals in fact be a sign of premorbid OCD? Evidence seems to be mounting in support of this notion.

Early and seemingly normative obsessive-compulsive/ritualistic behaviors may in fact be precursors to the bona fide condition.

One study found that while OCD children and controls did not differ in frequency and type of superstitions, parents of the OCD children reported significantly more remarkable patterns of early ritualistic behaviors than did parents of the control group of children (Leonard et al., 1990) .

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Differential Diagnosis (contd.) Asperger Syndrome (AS): Social oddness/ineptitude, “obsessive need

for sameness”), hyperfocus on minute details as opposed to seeing the whole or the “gestalt” of a situation, and cognitive inflexibility (see APA, 2000; DuCharme & McGrady, 2003; Klin 2000).

Some of the more OC-type behaviors often seen in an AS person’s perseverative ideation/fixation on certain themes (such as particular celebrities, romantic interests, computers, trains, foods, principles such as fairness), rigid need for consistency/predictability (e.g. arrangement of a room, rules, activity plans), and anxiety and low frustration tolerance when these processes are challenged or disrupted, can easily masquerade as OCD and thus require a clinician’s careful scrutiny in the diagnostic and treatment process.

The clear differences: In AS, these obsessions and fixations tend to be desired, non-distressing, and ego-syntonic. There is no identifiable obsession-compulsion cycle maintained by negative reinforcement, and these preoccupations and impulsively acting upon them do not produce distress.

Of the 20 AS students at The Learning Clinic, and most with notable OC-like behaviors, 3 of 6 were originally misdiagnosed with OCD. After careful differential diagnosis review, only 3 currently qualify for a comorbid diagnosis of OCD.

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Differential Diagnosis (contd.)

Childhood Bipolar Disorder: Not a condition that normally is thought of as sharing many traits with pediatric OCD.

However, the perseverative ideation, intense internal focus, fixation on particular themes/principles and the minutiae of certain situations, irritability, and extreme cognitive rigidity common in young individuals with Bipolar Disorder can often mimic obsessions.

The actions that such individuals take to gratify their fixations are often mistaken for compulsions.

The tenacity with which some youngsters cling to and defend these ideas and behaviors, and their intense response to being thwarted or challenged bears some similarity to the anxiety and frustration experienced by OCD youngsters.

Key distinguishing factor: the marginal or absence of distress in Bipolar Disorder at recognizing such patterns of behavior. Another is the mechanism by which in pediatric OCD, compulsions are carried out to prevent or neutralize certain events and accompanying anxiety.

Case example of Tony

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Differential Diagnosis (contd.)

Disentangling Pediatric OCD from other anxiety disorders: Obsessions in the absence of compulsions are rare. Other anxiety disorders, such as Panic Disorder, Generalized Anxiety

Disorder, and phobias tend to be marked by more pervasive worry and anxiety (except in the case of specific phobias) but an absence of compulsions or the overwhelming need to carry them out.

One common complicating factor is that a youngster may develop phobic avoidance behaviors in response to feared situations or stimuli that may mimic a compulsion or ritual.

Differential diagnostic keys: A opposed to phobias 1) OCD youngsters tend to have multiple obsessions and rituals, 2) OCD symptoms are usually not tethered to one feared situation or stimulus, and 3) rituals in OCD tend to be less pragmatic and functional (or more “superstitious” in nature) compared to more reality-based avoidance or worrying behaviors in phobias or other anxiety disorders.

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PANDAS

Pediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal Infection (Allen Leonard, & Swedo, 1995).

PANDAS’ relation to movement disorders (e.g. Sydenham’s Chorea) and comorbidity with tics was a clue.

Following a positive finding for group A beta-hemolytic streptococci (GABHS) infection.

Anti-streptococcal antibodies that are produced in response to the infection end up attacking the neuronal cells of the basal ganglia rather than the infection itself.

This infectious process can clearly trigger the sudden onset and/or exacerbation of OC and tic symptoms.

Case of Allison- sudden onset of rituals, aversions, social isolation, tics. Long time to diagnose. Significant functional impairments- negative reactions from teachers and peers, ridicule, exclusion, etc.

Tx- plasmapheresis, prophylactic antibiotics Recently questioning pneumococcal involvement as well

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Family History

The genetic-based familial aggregation of OCD appears obvious and has received strong support.

54 PANDAS children: 26% had at least one first degree relative with OCD, with 11% of parents qualifying for OC Personality Disorder Lougee, Perlmutter, Nicholson, Garvey, and Swedo (2000).

Twin studies: significant family aggregation of OCD (Hettema, Neale, & Kendler, 2001).

2-year follow-up of children of parents with OCD: significantly greater likelihood of OCD and other anxiety disorders in these children (Black, Gaffney, Schlosser, & Gabel, 2003).

Larger study: family aggregation of 11.7% compared to only 2.7% in controls (Nestadt et al., 2000).

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Possible Etiologies

Many structures and processes have been implicated in OCD:

Neuroanatomical (via MRI, CT, and PET):

The dorsolateral prefrontal cortex (DLPFC) and its connection with the limbic circuitry is another area of interest (seen as being involved in governing purposeful behavior, evaluating external cues in order to self-adjust behavior, and exerting executive control over limbic function). Evaluation of threat.

The cortico-striato-thalamo-cortical circuits (CSTC) seen as connecting these limbic regions have also been identified as playing a key role in OCD phenomena. Using learning tests, Rauch et al. (1997) found that while control individuals accessed striatal areas (underlying implicit memory), OCD individuals did not, and actually compensated by accessing more hippocampal areas (implicated in explicit memory). 2000).

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Possible Etiologies (contd.)

Arising largely out of pharmacologic treatment studies, neurotransmitters have been identified as playing a major role in Obsessive-Compulsive Disorder:

Serotonin The fact that both non-selective serotonin reuptake inhibitors (SRIs) and selective serotonin reuptake inhibitors (SSRIs) have received resounding support as the pharmacologic treatments of choice for OCD is a strong indicator of this.

However, the serotonergic system is so complex in terms of its many receptor sites and subsequent interactions with other neurotransmitters.

For the most current and comprehensive review of the pharmacological and related aspects of pediatric OCD, see Grados and Riddle (2001).

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Behavioral Model of OCD

Obsessions are thought to arise from an inherently poor tolerance for uncertainty, difficulty discriminating real from imagined threat in a situation, and subsequent efforts to control or make predictable a world which is often seen as threatening and unpredictable (O’Leary & Wilson, 1975).

The ambiguity and uncertainty become so intolerable that one feels compelled to bring certainty to the situation through either avoidance or through mental or physical rituals.

One perspective: these behaviors become associated with anxiety relief by chance, but that they then become reinforced by the “causal” relationship that the individual erroneously interprets between them and the averting of dreaded events and concomitant anxiety.

Key: OC individuals have difficulty discriminating real from illusory (or rational from irrational) reinforcement contingencies, develop a distorted sense of social causality, and thus engage in these exaggerated forms of superstitious behavior.

In a short period of time, the obsessions and anxiety return and pull for an even more potent obsessive response to address the distress.

“Reparative response” model for rituals like hand-washing? A child might “do something wrong”, experience anxiety and guilt, expect to be punished, and engage in some atoning or reparative act (that may or may not be connected to original misbehavior), and thus mollify their parents’ disappointment while quelling their own anxiety.

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Integrated Model of OCD

Generalized biological (i.e. genetic), psychological, and specific learned vulnerabilities interact = vulnerability to emotional arousal/dysregulation, poor tolerance for uncertainty, diminished sense of control, and misinterpretation of cues/events.

Innocuous or moderately emotionally arousing events occur (e.g. dirty lunch table, counter, or toilet seat, or an interaction with a particular teacher)– they are catastrophically misinterpreted- “false alarm” is sounded- anxiety and dread are experienced in anticipation of catastrophic outcomes, and a perceived inability to control the situation.

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Integrated Model of OCD (contd.)

What might be a problem is experienced as definitely a problem E.g. “I may get sick from these germs” experienced by most children is experienced as “I will get sick from these germs” by OCD youngsters. Or, in the case of aggressive obsessions, the unacceptable intrusive thought or image of hitting a teacher is experienced as if it is actually being acted upon- thought-action fusion.

These intrusive thoughts and images (i.e. obsessions) of negative outcomes and worst case scenarios persist. The urge to neutralize the threat and thus decrease the accompanying anxiety and “make things certain” grows.

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“I need to wash to make sure that this does not happen’ or ‘I need to avoid such objects or situations so that I do not get sick”, or “ I need to block this out of my mind and distract myself or I will act on this unacceptable urge”.

So, active compulsions or avoidance rituals (“safety behaviors”) are carried out to “neutralize” the catastrophe and the accompanying distress. E.g. washing repeatedly to rid oneself of contamination, avoiding potentially contaminated objects, or distracting oneself, blocking out the aggressive thoughts/images (i.e. thought blocking), or purging the images

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The averting of disaster is misattributed to the compulsion. Thus, the “safety” behavior is strengthened via negative reinforcement (i.e. the neutralization or removal of an aversive stimulus- in this case the anxiety and guilt experienced in relation to the contaminant or the unacceptable aggressive images respectively) (Wolpe, 1969).

Distress is eased but only temporarily- The doubt- or uncertainty-laden intrusive thoughts and images eventually return, either spontaneously or in relation to relevant cues.

Then, the compulsion is repeated.

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Not unlike medicine tolerance and dependence, a more potent “dose” of the compulsion or “safety behavior” is necessary to produce “relief” from the increasing intensity of the thoughts, images, or urges.

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“Risk Factors” Associated with Development of Pediatric OCD and Symptom Severity

Behavioral inhibition (fearfulness, apprehension, clinginess (Kagan, 1997))

Avoidant coping style Low self-esteem Ritualistic, perfectionistic Over-perceiving threat Limited insight Defensiveness/oppositionality Family- 1st degree relatives of identified OCD individuals have

almost a 500% higher lifetime prevalence than controls. Parents/Dynamic- anxiety, overprotectiveness, perfectionism,

interference, enmeshment, less confident in child’s ability.

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Evidence-Based Interventions for Pediatric OCD

Emerging from exposure-based phobia treatment protocols (Emmelkamp, 1994) and adult OCD intervention models (Dar & Greist, 1992):

Psychosocial treatments for pediatric OCD have burgeoned within the past 10 years (e.g. Piacentini et al., 2002; March, Franklin, Nelson, & Foa, 2001).

Cognitive-Behavioral Therapy, or CBT, has emerged as the most efficacious psychosocial treatment to date for pediatric OCD.

Integrating the behavioral, cognitive, and psychodynamic traditions (see Hollon & Beck, 1994; Meichenbaum, 1992), CBT approaches are based on the premise that one’s beliefs, perceptions (e.g. schemas), and affect, and not just reinforcement or punishment, are key determinants of behavior, and vice versa (Bandura, 1978).

Exposure and response prevention strategies (E/RP) have proven most helpful in bringing about lasting behavioral change and symptom relief. This approach is predicated on the notion that sufficient exposure to this stimuli (Foa, Steketee, & Millby, 1980)) and thus to the reality that no real threat exists, facilitates the “resetting” of the “anxiety thermostat” to normal (after an initial spike in anxiety).

Preventing of the compulsion or response serves to break the maladaptive cycle of negative reinforcement wherein the temporary relief from the obsessions and fear had reinforced the “safety behavior” that had been superstitiously used.

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Evidence-Based Interventions for Pediatric OCD

Most Recently, clinical researchers began to adapt a protocol for treating youngsters (March & Mulle, 1995; 1998; March, Mulle, & Herbel, 1994).

Still considered cognitive-behavioral in orientation, somewhat of a hybrid integrating the most effective and appropriate techniques from several accepted therapeutic orientations, thereby ensuring that it can be applied as flexibly and efficaciously as possible (March et al., 2001):

Cognitive Therapy techniques (CT): cognitive restructuring, self-talk or self-coaching, and attribution retraining, psychoeducation for children and parents around OCD and its neurobehavioral and chemical aspects,

Narrative techniques: externalizing the problem (Chansky, 2000; White & Epston, 1990) and addressing unique outcomes.

Family systems concepts focusing on integrating family work and addressing the reciprocal influences of OCD between a child and his or her family, more active-directive behavioral strategies such as limit-setting, modeling, homework, and contingency management (e.g. positive reinforcement contingent upon progress), and even

Psychodynamic approaches involving emphasizing the therapeutic alliance, insight, and internalization of behavior and perceptions

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Pharmacologic and Combined Pediatric OCD Interventions

Pharmacotherapy: serotonin reuptake inhibitors (SRIs) and selective serotonin reuptake inhibitors (SSRIs), either alone or in conjunction with psychosocial interventions (Geller et al., 2003). Most common agents: Clomipramine, Fluoxetine, Paroxetine, Sertraline, Fluvoxamine, & Citalopram.

Multiple double-blind placebo studies on these medicines have shown similar efficacy and tolerability, with SSRIs emerging as first-line treatments combined with CBT/E/RP.

Pediatric Obsessive-Compulsive Disorder Treatment Study (POTS). (Franklin, Foa, & March, 2003). Multi-center, randomized, masked clinical trial to evaluate the relative benefit and durability of 4 treatments: sertraline (an SSRI under the trade name Zoloft), CBT, combined sertraline and CBT (COMB), and pill placebo, for children and adolescents. Sample of 120 participants.

The Expert Consensus Treatment Guidelines for Obsessive-Compulsive Disorder (March et al., 1997): 69 experts on OCD and provided a much-needed assessment of the above-mentioned factors. Specifically, selecting the components, pacing, and structure of treatment (e.g. CBT, medication, combined) based on age, patient response, symptoms, time constraints, medication side-effects, and comorbidity was a major focus. Consensus supports CBT or combined CBT and medication as the treatment of choice for pediatric OCD and for those with milder symptoms.

CBT and E/RP tacks are cited as best suited to clearly circumscribed symptoms such as contamination fears, symmetry, and hoarding, while less concrete symptoms such as scrupulosity, pathological doubt, and obsessive slowness are most amenable to cognitive approaches.

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March & MulleManualized Pediatric OCD Protocol

March and colleagues (e.g. March & Mulle, 1998; 1995; March et al., 1994) have streamlined this approach into a manualized treatment protocol.

Explicitly designed to enhance a) patient and parental compliance, b) exportability to other populations and settings, and c) empirical evaluation. This involves 5 phases of treatment over the course of 12 to 20 sessions.

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March & MulleManualized Pediatric OCD Protocol

Visit/Step Goals Components Considerations

Weeks 1 and 2 Psychoeducation

and cognitive training

Establish rapport. Present neuro-behavioral model. Externalize OCD as an “unwelcome visitor”. Use appropriate metaphors “Brain hiccups”, “Brain lock”, “False alarms”. Etc.

Assess treatment factors (e.g. age, developmental issues, OC features, medical profile, family psychopathology, etc). Assess OC content, severity, and impairment (CY-BOCS, OCS, CGS/CHI).

Week 2 Mapping OCD,

Cognitive Training

“Bossing back” OCD, self-talk, flexible coping strategies, positive reinforcement of accurate perceptions. Determine specific obsessions, compulsions, triggers, avoidance behaviors. “Easy trial” E/RP to gauge child’s tolerance and compliance.

Increasing sense of self-efficacy, predictability, and controllability. “Map out” where child has success, where OCD has control, and where they both “win”. Determine “work zone” and stimulus hierarchy: what can safely be addressed first, and so on.

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Manualized Pediatric OCD Protocol (contd.)


Weeks 3-12 Exposure and response-prevention

Address therapy variables (e.g. comorbidity, symptom severity, family psychopathology, etc.) Address situation at school via behavioral consultation model (Adams et a., 1994)

Graded (gradual) vs. flooding exposure? Maximize child’s control of the pace within reason. Imaginal and in-vivo work. In-session practice and review. Homework monitored by clinician.

Weeks 11-12 Relapse Prevention and Generalization Training

Greater use of imaginal exposure (as opposed to in vivo) and RP along with CT

Discuss relapse prevention. Address termination issues and booster sessions. Focus on internalization and generalization.

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Manualized Pediatric OCD Protocol (contd.)


Visits 1,7, and 9 Parent Sessions Graded involvement. Parents as collaborators/

coaches.

Address family pathology, motivation, and involvement in/impact from OCD. Collaboration.

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Some Treatment Study Outcomes

March et al. (1994) observed at least a 50% reduction of OC symptoms in 9 of the original 15 patients with no relapse at follow-up as far as 18 months later.

Subsequent “booster” sessions facilitated the discontinuation of medication for 6 of these children.

Scahill, Vitulano, Brenner, Lynch, & King (1996): 7 children and adolescents to structured behavioral therapy. Mean symptom reduction of 61%, with a range of 30% to 90%, and stability of gains for at least 3 months.

Wever and Rey (1997): combined CBT and pharmacotherapy work with 57 OCD youngsters resulted in a 68% remission rate with 60% decrease in symptoms over 4 weeks.

Franklin et al. (1998) conducted an open clinical trial with this CBT protocol which produced at least 50% reduction in symptom severity in 12 of the 14 participants. Mean symptom reduction was 67% at post-treatment and 62% at 9-month (average) follow-up, indicating further support for this approach.

Family Treatment (Waters, Barrett, & March, 2001): mean reduction of 60% in symptom severity, as well as a noticeable decrease in family involvement of the disorder.

In a more recent application (Benazon et al. (2002)): 10 of 16 patients experienced at least a 50% reduction in symptoms.

Piacentini et al. (2002): 42 youngsters and found a response rate of 79%.

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Treatment in Residential School Settings: The Case of Mary

Articulate, polite, and friendly but socially awkward 16-year-old girl from the west, Enrolled 3 years ago at The Learning Clinic (TLC): a therapeutic residential school

located in rural New England. She was initially referred to another residential program with a more diagnostic and

psychodynamic approach, and experienced little success in her short time there. As a child: Demonstrated behavioral inhibition, poor stress resilience, anxiety, and

behavioral peculiarities. Presented with some Asperger Syndrome-like traits (e.g. pedantic speech, social pragmatics deficits, restricted and idiosyncratic interests, significantly higher verbal than performance scores on intellectual measures) despite her fairly outgoing demeanor.

Highly perfectionistic, superstitious, scrupulous, indecisive, and ritualistic. Preoccupations with literary idioms, romanticized fascination with Spanish cultures,

and her insistence on wearing skirts and gray socks as opposed to pants or shorts. Mary’s slowness, perfectionism, and difficulty making simple transitions made it very

difficult for her to keep pace academically and socially. Despite her commendable academic success and sense of pride she derived from such pursuits as drama, music, and art, she became anxious and depressed.

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Treatment in Residential School Settings: The Case of Mary

She endured significant peer and staff ostracism, withdrew from these once-preferred activities, and eventually came to fear the prospect of school, thus avoiding it altogether in favor of in-home tutoring.

Given the level of dependency Mary developed upon her parents throughout this time, the transition to TLC was highly disruptive for her, and thus presented an impediment that needed to be addressed before any focused intervention could be implemented.

Of immediate concern: Her ritualized showering and hygiene routine (often taking up an hour or more), hoarding (books and “swatches of familiar material”), compulsively smelling food before each bite, ordering her possessions, obsessive slowness with transitions and schoolwork, and excessive reassurance-seeking.

More subtle symptoms such as fear of disinhibition (letting her feelings out all at once and losing control), scrupulosity, and mental compulsions such as praying, ordering ideas and tasks, and perfectionistic word-finding before speaking, became apparent through later assessment with the CY-BOCS.

“I am planning on being at TLC for only a short time, and that after only a few weeks and addressing some of the problems that got in the way of my schoolwork, I will be moving back home”. Mary was defensive of many of her behaviors and either marginalized their significance, or justified them as preferred, adaptive traits which she was not willing to relinquish. This presented some challenge for treatment planning in that her behaviors’ soothing function was apparent, as was their becoming somewhat ego-syntonic.

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Mary’s Treatment Protocol

Weeks Goals Components Considerations

1-5 Rapport-building with Mary and family. Introduce treatment plan.Psychoeducation. Assessment of symptoms/impairment. Assess medication regimen.

Twice weekly individual sessions. Weekly family phone sessions. In-classroom support visits. Training team on E/RP protocol. Externalizing symptoms w/ age-appropriate metaphors. Develop incentives and contracts.

Mary & family: Fosteringtrust in clinician, treatmentteam, and in the program.Facilitating investment inthe TLC program.Addressing transitionalanxiety & stress.Coordinate with social skill goals.

6-10 Negotiate pacing.

Mapping OCD.

Triaging symptoms.

Cognitive training.

E/RP.

3x weekly in vivo E/RP sessions in residence and school. Limit-setting & Pacing for slowness/transitions. Treatment team meeting to discuss progress. Hurried pacing to address obsessive slowness.

Addressing Mary’s defensiveness, poor insight into her symptoms, and unrealistic expectations. “Cataloguing” successes and unique outcomes .

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11-20 Targeting secondary/ more subtle symptoms: mental rituals, scrupulosity etc. Distinguishing threats from hassles.

Introduction of weekly in vivo community sessions. Parent sessions preparing for home visits. More imaginal exposure. CY-BOCS assessment #2. Home visit #1.

Training parents as coaches. Addressing enmeshment and enabling behaviors. Encouraging reasonable risk-taking. Evaluate home visit.

21-36 End of active E/RP. Assessment of challenges. Relapse prevention. Generalizing skills.

Prescribed, systematic introduction of stressful social demands. Introduction of more insight-oriented work.

Challenging Mary’s use of internal coping resources while supporting her and providing a safe way to “fail and recover”

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37-52 Mapping past year: successes, challenges, and new goals

Planning for transition to Assisted Living level of TLC program. Assessing impending demands and Mary’s ability to meet them.

Assess Mary’s ability to cope with less external structure and more demands. Assess insight. Assess level of independence.

53-Present Maintenance & strengthening of gains. Relapse prevention

More psychodynamic, insight-oriented work with Mary. Continued psychoeducation/ coaching with parents. Preliminary transition planning: college, independent living, career.

Discussing individuation: a difficult topic for Mary and mother. Reflecting upon successes. Focus on meanings of individuation, new relationship roles, and future goals: independent living, college, driving, etc.

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Mary’s Treatment Outcomes

Week 6 of the process, Mary’s initial CY-BOCS score was 19 (moderate). Week 22, just after active E/RP was discontinued and the natural structure of

the program was allowed to take over as the therapeutic vehicle, this score had dropped to 14.

After a year, Mary’s CY-BOCS score was an 11, indicating that she was hardly symptomatic.

She currently reports only fleeting moments of mental rituals (e.g. ordering tasks/ideas) and minor compulsive worrying when her responsibilities seem to mount. Most importantly though, Mary’s stress resilience and cognitive flexibility have improved noticeably, her level of OCD-related functional impairment has gone from severe to between mild and none, and her self-advocacy has become a reference point for many of her peers.

Where once she would cry for 25 minutes in response to being told to set her clock to the correct time (and not 15 minutes ahead), or would become immobilized when not able to make a simple decision or when prompted to finish her hygiene routine, she now independently organizes her day, handles the many challenges of with confidence, and routinely makes difficult decisions regarding competing priorities in her social and academic life.

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Family’s progress: Initial home visits showed some promise, though moderate regression was obvious, with mother accommodating her behaviors and continuing to organize most aspects of Mary’s day for her.

Parents are highly motivated, caring, and supportive of our approach. They came to recognize their role in unwittingly colluding with Mary’s

rituals and dependency, and began to take some gradual but bold steps to address this.

Mother: became attuned to how Mary cued into her own anxiety, and so she worked diligently at managing this. She also made strong efforts to back off the level of accommodation, thus guiding Mary in taking more initiative and being more decisive about her daily responsibilities and plan.

Most recently: the major challenge has been not so much Mary’s potential for regression to old patterns, but parents’ and brother’s adjusting to the tremendous behavioral progress and maturity that Mary has experienced, and what this means for family members’ changing roles in relation to this.

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Mary is currently at the highest privilege status in the TLC program and is living with a peer in an assisted living house on campus. There, she needs to plan and prepare meals, clean, coordinate chores with her housemate, shop, arrange transportation, and keep track of basic house-maintenance issues.

She holds a job at a nearby bed & breakfast, routinely ventures into the community to do her laundry, and is beginning the driver’s education process.

She takes voice lessons in the community and is active in drama and art. 24 months ago, Mary would not have predicted this level of success, and

looks back self-effacingly at her naive resistance, lack of insight, and unrealistic expectations.

Presently planning for her eventual transition back to home community, working with parents on managing this significant and new life phase, and beginning to consider her college and vocational opportunities.

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Key Aspects of an Effective Therapeutic Educational Program

in Treating Pediatric OCD

CBT-oriented programs such as the Learning Clinic appear to be ideal for maximizing all aspects of treatment, and for addressing some perennial shortcomings cited in previous treatment studies: consistent, data-based, replicable

Manualized but flexible/adaptable High level of structure and predictability, reliable and effective

status/privilege-based contingency management system Highly consistent coordination of services (i.e. “fidelity of treatment”) between

school, residential, clinical, and family components. High level of accountability within and amongst components of the program Strong family support of the program, and required involvement in

treatment

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Key Aspects of an Effective Therapeutic Educational Program in Treating Pediatric OCD (contd)

Ideal for generalization of gains, increased resilience, and relapse prevention: the capacity to decrease structure while increasing demands to optimally challenge students’ coping resources and providing a natural exposure/response prevention vehicle

March & Mulle’s manualized E/RP treatment protocol CBT package was well-suited it was for such a milieu, and vice versa.

Rather than relying on one or two clinicians to conduct treatment, it was the program itself, and its highly coordinated components, that became the vehicle for therapeutic change.

In-residence E/RP or cognitive strategies that began with Mary during the day could be continued and practiced with the help of residential staff in the evening, with full confidence that the procedure and follow-through would be consistent and well-documented.

Thus, such strategies could be supported by any number of staff in a variety of on-campus and community settings.

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Notions of Prevention orMaximizing Resiliency

The notion of prevention per se of pediatric OCD is grandiose and unrealistic, however, minimizing risk factors while enhancing resiliency is crucial in managing the functional impact of this disorder.

Multisystemic coordination between parents, school counselors and staff, and possibly community mental health professionals is crucial at all junctures.

Proactive attunement of a youngster’s adult advocates is crucial, is identifying social and community risk factors such as insensitive or inadequately supported or trained school staff, peer rejection or bullying, self-isolation, academic struggle, and a generally hostile and/or competitive school environment.

The challenge here is that compared to classic “high risk” behaviors such as drug abuse, sexual acting out, and antisocial behavior, pediatric OCD and other anxiety disorders are less visible, may be seen as less problematic, and thus fall low on priority list when it comes to mobilizing school resources.

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Nevertheless, this condition is still very disruptive, stigmatizing, and debilitating, and can have functional impairment and subsequent socioemotional consequences that we have not yet begun to appreciate.

Minimizing risk factors: educating parents (especially in relation to family aggregation issues), school and community leaders, and students themselves about anxiety disorders and OCD in particular, and the very visible functional impairment implications, is a logical first step.

Education professionals need to build more tolerant school and social environments for those with the condition and other more silent or internalizing disorders.

Enhancing resiliency: and as socially-mediated stress: Help youngsters cope more flexibly with such challenges is crucial. Supportive exposure to moderately stressful situations, and a systematic titration of external supports, such that these children can eventually manage increasing demands without perceiving them as threatening or overwhelming.

Notions of Prevention orMaximizing Resiliency (contd)

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The case of Mary: illustrates the benefit of certain resiliency or protective factors in contributing to tertiary prevention, and likely reducing the functional impact of her OCD.

Mary arrived at the Learning Clinic with some very strong personal, family, and community protective resources already in place.

She demonstrated a talent for vocal music and drama, which was a great source of pride and motivation for her and which were strong incentives during her first few months.

Family-wise: and despite some maternal anxiety, over-protectiveness, and accommodation of Mary’s rituals, she benefited from a warm, cohesive and supportive home and a close relationship with her parents, brother, and relatives.

Moreover: her parents have been supportive of our work with Mary, healthily involved in it, and motivated to make the necessary changes in the family to support her progress.

Finally: Mary had a strong social support network made up of friends, family acquaintances, mentors, and former teachers, with all of whom she has remained in contact throughout her stay at TLC. In addition, she was able to learn the interpersonal skills to build a new community within and beyond her school environment.

Mary has been able to readily access these resources during our work, and this has had a profound impact on her motivation to progress and thus on her ability to benefit from the therapeutic milieu.

Documents

Evidence-Based Approaches to the Treatment and Prevention of Pediatric Obsessive-Compulsive Disorder in Educational and Residential Settings: Real World