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. Netherlands Obsessive Compulsive Disorder Association (NOCDA) Design and rationale of a longitudinal naturalistic study on the course of OCD and clinical characteristics and healthcare utilization of the sample at baseline. Harold J.G.M. van Megen , Josien Schuurmans, Ton J.L.M. van Balkom, Jan H. Smit, Merijn Eikelenboom, Maarten Kaarsenmaker, Gerrit Glas, Gert-Jan Hendriks, Koen R.J. Schruers, Nic J.A. van der Wee, Patricia van Oppen. 1 NOCDA: The formation of a nation- wide network of seven mental health care centres devoted to the advancement of knowledge about the prognosis and treatment of OCD. GGZinGeest/VuMC Amsterdam LUMC/GGZ Rivierduinen Leiden Adhesie Almelo Marina de Wolff Ermelo GGZ Nijmegen/ Kliniek Overwaal Lent GGZ Noord-en Midden Limburg Mondriaan Zorggroep 2 Maastricht Why do we need longitudinal studies on the course of OCD? • OCD is a debilitating and prevalent anxiety disorder • It affects 2% of the population lifetime • OCD is associated with a high use of health care services (Bijl & Ravelli, 2000) and persistent impairment in work functioning (Yaryura-Tobias et al., 2000; Steketee, 1997) • Extensive economic ramifications • OCD is listed as the 10th most disabling medical disorder in the WHO burden of disease study (Murray et al., 2004). 3 Why do we need longitudinal studies on the course of OCD? • A chronic course in approximately half of the cases • Despite development and implementation of evidence based treatments (ERP, CT en SSRI’s) (e.g. van Oppen et al., 2005). • Complete recovery of OCD is relatively rare: 25% of cases (Fisher et al., 2005). • Determining factors of this unfavourable outcome remain unknown. 4 Predictors of chronicity 1. Early-onset OCD may have a stronger familial and hereditary component than late onset OCD (do Rosario-Campos, 2005; Hanna et al., 2005; Nestadt et al., 2000; Pauls et al., 1995). Early-onset OCD may be related to higher co-morbidity patterns, a worse outcome and/or higher baseline severity (e.g. de Mathis et al., 2008; Pinto et al., 2006; Albert et al.,2002; Fontenelle e.a., 2003) 2. Known predictors of a detrimental course include: – – – – Presence of compulsive symptoms (instead of obsessions alone) Lower psychosocial functioning schizotypic personality traits. Presence of certain symptom dimensions, e.g. hoarding 3. Most available studies focus on environmental and psychosocial factors 5 Predictors of chronicity HOWEVER: • It is highly unlikely that any single environmental or psychosocial factor or subset of psychosocial factors is responsible (Penninx et al., 2008; Merikangas et al., 2002) • A vulnerability-stress model incorporating both a genetic predisposition to develop OCD as well as environmental factors that trigger and sustain this disposition may be more appropriate (Grisham et al., 2008). • Studies on genetic influences tend to disregard the influence of environmental factors (and vice versa) (Moffit et al., 2005) Therefore • NOCDA integrates possible psychological and demographic variabels as well as biological measures (blood and DNA sampling, blood pressure, weight, abdominal & hip circumference) in a 6-year prospective study in 419 clinically referred OCD patients. 6 Main objectives 1. To be able to evaluate which patients run a serious risk of developing chronic symptomatology and becoming resistant to treatment. 2. To describe the long-term prognosis of OCD in terms of course, the development of co-morbidity, the development of chronicity and public health consequences as this relates to other anxiety disorders and major depression (through NESDA). 3. To examine biological and psychosocial determinants and their mutual interaction in predicting the course of OCD. 4. To identify possible new avenues for the tailored treatment of patients at high risk for chronicity. 7 Methods • Inclusion of 419 clinically referred adult OCD patients in different stages of the disease and with different degrees of illness severity. • Naturalistic multi-centre 6-year longitudinal design • All patients diagnosed with OCD that are referred to one of the participating mental health care centres are asked permission to be contacted for research purposes during the intake procedure. • Included: persons aged 18 years and over, with a diagnosis of OCD, as determined by the administration of the Structural Diagnostic Interview for DSM-IV disorders (SCID I; First, Spitzer, Gibbon, & Williams, 1999). • Exclusion criteria: inadequate understanding of the Dutch language for the purposes of the completion of interviews and self report questionnaires. 8 Methods • Measurements at five times within a 6-year period; at baseline and after 1, 2, 4 and 6 years. • Measurements are performed by experienced and trained research nurses or psychologists. • Measurements include axis I diagnosis and • co-morbidity (SCID-I), • severity and • course of ocd and • co-morbid psychological symptoms (anxiety, depression, tic disorders, autism), • biological measures, • healthcare utlization, • work productivity, • disability, • health indicators and • psychosocial functioning (e.g. loneliness, trauma exposure and life events) 9 Topic Measurement instrument Data collection Severity Y-BOCS (10 items) Beck Depression Inventory (21 items) MADRS (21 items) Beck Anxiety index (21 items) Y-GTSS (10 items) DSM-IV ADHD (18 items) PI-R (41 items) Y-BOCS symptoms (80 items) LIFE-CHART PDD-SQ (50 items) Interpretation of Intrusion Inventory (31 items) Interview Self-report Interview Self-report Interview Interview Self-report Self-report Interview Self-report Self-report TIC-P health care/Karasek Questionnaire (16 items) Interview/self report Public health consequences Disability Work/ loss of productivity / content Mortality / causes of death EuroQol (16 items) TIC-P (10 items) CBS data Self-report Interview Death records Demographic information and personality characteristics Demographic and biographic info Personality characteristics 58 items FFPI (100 items) Self-report Self-report Psychosocial functioning Recent Events Expressed emotion Daily Hassles Attachment Social support/activity Loneliness & affiliation Recent events questionnaire (23) LEE (39 items) Daily Hassles (20 items) AAS (5 items) SSI (20 items) Loneliness & Affiliation Scale (17) Self-report Self-report Self-report Self-report Self-report Self-report Self-report Self-report Self-report Self-report Medical Exam Blood pressure Standard self-report questions Standard self-report questions Standard self-report questions Standard self-report questions Weight, height, waist + hip circumference Systolic and diastolic BP Assessment Genetic determinants DNA/lymphocytes Family history Full blood/buccal swabs Family tree Blood Interview Course of psychopathology Severity: - OCD - depression - anxiety - Tics - ADHD Presence and severity of OCD subtypes/symptom dimensions History OCD Autism OCD cognitions Patients' perspective Health care use / need of care (Physiological) health indicators Presence of chronic illness Alcohol and drug use Smoking behaviour Sleep Body composition Medical Exam 10 Questions adressed 1. How does our sample relate to other international OCD samples in terms of illness severity and co-morbidity patterns? 2. Axis I Co-morbidity in OCD 3. Recent healthcare service utilization in OCD. 4. Is early onset ocd related to greater illness severity, as established by - the level of ocd symptoms, - levels of co-morbidity and - use of health care services? 11 Baseline demographic characteristics • 419 OCD patients included. • Approximately 91% (N=382) of the sample met full current DSM-IV criteria for OCD at the time of enrolment into the study. Nine percent had met full criteria for OCD in the past (N=37). • 56% (N=234) female. • Age at enrolment varies from 17 to 79 years old, mean age is 36.6 years (standard deviation (SD)=10.92). Vast majority (70%) is under 42 years old. • 95% of the sample has the Dutch nationality. • 36,5% of the participants have a higher vocational or university degree (master) • 48.7% of OCD patients are living together with a partner, 37.2% is single. 12 Clinical characteristics Variable Mean SD Range Age at enrolment 36.60 10.92 17-79 Age at onset first obsessions 16.91 8.86 3-58 Age at onset first compulsions 16.94 9.41 3-58 Duration of illness (yrs) 18.57 12.52 0-64 Y-BOCS severity (0-40) 19.89 8.10 0-40 N 33 90 140 121 30 % 7.9 21.5 33.4 28.9 7.2 Y-BOCS OCD severity categories Subclinical (0-7) Mild (8-15) Moderate (16-23) Severe (24-31) Extreme (32-40) 13 Questions adressed 1. How does our sample relate to other international OCD samples in terms of illness severity and comorbidity patterns? 2. Axis I Co-morbidity in OCD 3. Recent healthcare service utilization in OCD. 4. Is early onset ocd related to greater illness severity, as established by - the level of ocd symptoms, - levels of co-morbidity and - use of health care services? 14 Representativeness of the sample; Comparison Y-Bocs severity categories Brown study (Pinto et al., 2006) Y-BOCS OCD severity categories NOCDA N=419 Brown n=293 7,9% 8,2% Mild (8-15) 21,5% 19,5% Moderate (16-23) 33,4% 29,4% Severe (24-31) 28,9% 37,2% 7,2% 5,8% Subclinical (0-7) Extreme (32-40) 15 Questions adressed 1. How does our sample relate to other international OCD samples in terms of illness severity and co-morbidity patterns? 2. Axis I Co-morbidity in OCD 3. Recent healthcare service utilization in OCD. 4. Is early onset ocd related to greater illness severity, as established by - the level of ocd symptoms, - levels of co-morbidity and - use of health care services? 16 Clinical characteristics; axis I co-morbidity DSM-IV diagnosis Lifetime Current N % N % 92 22 172 41.1 265 63.2 96 22.9 17 4.1 10 2.4 195 46.5 151 36 Any substance use disorder 53 12.6 20 4.8 Any somatoform disorder 21 5 21 5 Any eating disorder 44 10.5 19 4.5 OCD only Any mood disorder Any psychotic disorder Any anxiety disorder 17 Representativeness of the sample comparison lifetime co-morbidity rates Brown study (Pinto et al., 2006) 74,1% 80,0% 63,2% 70,0% 52,6% 60,0% 45,9% 50,0% 40,0% 30,0% 22,0% 20,0% 25,6% 9,2% 12,6% 4,1% 10,0% 2,7% 5,0% 7,5% 10,2% 5,0% eating* eating somatoform* somatoform substance* substance psychotic* psychotic anxiety* anxiety any mood* any mood OCD only* OCD only 0,0% 18 Representativeness of the sample comparison of current co-morbidity rates Brown study (Pinto et al., 2006) 58,0% 60,0% 50,0% 41,1% 36,0% 40,0% 30,0% 38,0% 22,9% 16,4% 20,0% 10,0% 5,8% 5,0% 6,1% 2,4% 2,0% 4,8% 5,0% 2,7% eating* eating somatoform* somatoform substance* substance psychotic* psychotic anxiety* anxiety any mood* any mood OCD only* OCD only 0,0% 19 Questions adressed 1. How does our sample relate to other international OCD samples in terms of illness severity and co-morbidity patterns? 2. Axis I Co-morbidity in OCD 3. Recent healthcare service utilization in OCD. 4. Is early onset ocd related to greater illness severity, as established by - the level of ocd symptoms, - levels of co-morbidity and - use of health care services? 20 Healthcare utilization • 92.6% of our sample had looked for help for OCD in the past. • However: in majority of cases OCD symptoms had lasted for ≥ 7 yrs before seeking help. Mean duration 9.88 yrs. Variable last 6 months Physician 75,9% Mental health care institute 41,1% Independent psychiatrist, psychotherapist 19,1% Company doctor 19,1% Social worker Daytime or part-time treatment Admitted to psychiatric hospital 6.4% 15% 6.9% 21 Questions adressed 1. How does our sample relate to other international OCD samples in terms of illness severity and co-morbidity patterns? 2. Axis I Co-morbidity in OCD 3. Recent healthcare service utilization in OCD. 4. Is early onset ocd related to greater illness severity, as established by - the level of ocd symptoms, - levels of co-morbidity and - use of health care services? 22 Early vs late onset OCD The majority of OCD patients have early onset OCD (70.2%) • Indications for greater illness seveirty in early onset ocd? NO. No significant differences with regard to -illness severity, -levels of axis I co-morbidity, -use of health care services. No difference with regard to co-morbid panic disorder Higher co-morbidity of lifetime affective disorder (68.1% vs. 57.3%, p<.05) Higher co-morbidity of bipolar disorder in early onset (4.7 vs 0%, p=.01) • BUT mean duration of symptoms before seeking treatment is much higher in the early onset group (11.75 vs 5.44 yrs, p<.001). 23 • This may contribute to a more detrimental course Conclusions 1. High co-morbidity in OCD, especially with affective disorders and other anxiety disorders 2. High use of health care services. 3. Dutch situation largely comparable to other international OCD samples. 4. No indications for greater illness severity in early onset vs late onset ocd. 24 Futher questions/keep me posted? Website nocda.amstad.nl mail [email protected] 25