CHEO Dual Diagnosis Program Evaluation

CHEO Dual Diagnosis Program Evaluation Flintoff, M.; Ad-Dab bagh, Y.; Visram, F.; Anderson, M.; Auclair, M.-A.; Boggett-Carsjens, J.; Roberts, N.; Savage, C. & Asliturk, E. Date submitted: June 27, 2008 Submitted to: The Provincial Centre of Excellence for Child and Youth Mental Health at CHEO 1

Abstract CHEO Dual Diagnosis Program Evaluation The CHEO Dual Diagnosis Team is an interdisciplinary team of professionals that provides mental health outpatient services to children and youth up to 18 years of age living with intellectual and developmental disabilities. A snapshot of services delivered by the team conducted in May, 2007 indicated that the team psychiatrist was providing psychopharmacological treatment, often advanced in nature, for 95% of active outpatients. Outpatients were all followed by at least one other team member, and 65% were also receiving specialized assessments and therapeutic interventions from two or more team services, including nursing, occupational therapy, psychology, social work, and speech/language pathology. The Dual Diagnosis Team Program Evaluation was designed to establish a sustainable process for continuous assessment of clinical outcomes and review of effectiveness of services. In addition, three questions were addressed in a preliminary manner: 1. What are the mental health needs of children and youth with intellectual and developmental disabilities presenting to a tertiary care children s hospital? 2. What is the preliminary evidence for the effectiveness of services at six-month follow-up? 3. What is the concurrent validity of the provincially-mandated outcome measure, the CAFAS [Hodges, 2003], for children and youth with intellectual and developmental disabilities? The collection of standardized assessment, treatment and outcomes measures was fully integrated with clinical practice. This included clinician, parent/caregiver and teacher ratings, and other indicators such as Emergency Department visits, need for hospital admission, and school status. In addition, parents/caregivers identified three qualitative treatment goals and levels of goal attainment were rated on a scale from 1 to 10 at assessment and at six-month follow-up. Families/caregivers were asked to give their impression of factors that had contributed to improvement or lack of improvement in each treatment goal. Our preliminary results for 21 consecutive outpatients seen since July, 2007 indicated that early adolescence is a particularly acute time for mental health needs in this population (mean age at assessment was 12 years 7 months). Fifty-two percent of outpatients had diagnoses of Autism and 71% had diagnoses of Mental Retardation. More than half of the children/youth with Autistic Disorder were diagnosed at initial assessment with Stereotypic Movement Disorder with Self-injurious Behaviour. In addition, mood and anxiety disorders were evident at assessment. Phenomenological content analysis of family/caregiver treatment goals for 21 families indicated 11 treatment goal themes. The three most frequently identified goals were: Improve Behaviour other than Aggression (eg. hyperactivity, compliance, sleep); Decrease Aggression; and Decrease Anxiety. Six-month follow-up data was available for 13 children/youth. Clinician s global ratings of outcome indicated significant progress (Mean GAF scores improving from 30.31 to 45.15; Mean CAFAS Total Scores improving from 131.54 to 89.23). Multivariate analysis of change in family/caregiver goal ratings was highly significant (p<.002) indicating significant improvement at six-month follow-up. The most frequently occurring attributions families made for progress in goal attainment were medication and specific therapeutic interventions. Families often identified more than one attribution for progress on a given goal. Interventions made by parents and positive changes at school were also reported to contribute to therapeutic gains. Failure to progress was attributed to characteristics of the child/youth that posed challenges for treatment or to family stressors. These children/youth continue to be followed and barriers to progress were reviewed by the team. Results of this program evaluation support the use of parent/caregiver-identified treatment goals and goal attainment scaling to ensure relevance of treatment and approaches and monitor progress. While it is clear that families find treatment with medication and other specific therapeutic interventions helpful for improving the quality of life for their child/youth, more specific recommendations regarding effective services will be established in future with greater numbers of participants. 2

Contents I Funding 5 II Introduction 6 1 Purpose of the program evaluation of The Dual Diagnosis Team, CHEO Mental Health Outpatient Services 6 2 Overview of The CHEO Dual Diagnosis Team and population served 6 3 Related research 7 III Methodology 8 4 Design, sample size and timing of data collection 8 5 Data collection 8 5.1 Standard Assessment Battery at initial assessment...................... 8 5.1.1 Parent-reported measures, identification of treatment goals and goal scaling.... 8 5.1.2 Teacher-reported measures.............................. 8 5.1.3 Clinician-reported measures.............................. 8 5.1.4 Treatment data.................................... 9 5.2 Six-Month Follow-Up..................................... 9 5.2.1 Parent-reported measures, goal attainment scaling, and interview for attributions for change (or no change) in treatment goal attainment............... 9 5.2.2 Teacher-reported measures.............................. 9 5.2.3 Clinician-reported measures.............................. 9 5.2.4 Treatment data.................................... 10 6 Limitations of evaluation methods 10 IV Results 11 7 Outcome-I: The mental health needs of children and youth with intellectual and developmental disabilities (N=21) 11 7.1 Gender, age and situation................................... 11 7.2 Distribution of Intellectual Disabilities and Pervasive Developmental Disorders....... 11 7.3 Mental Health Diagnoses................................... 12 7.4 Phenomenological analysis of family/caregiver treatment goals (N=21).......... 14 8 Outcome-II: Preliminary effectiveness data for an interdisciplinary mental health outpatient team at 6-month follow-up for children and youth with intellectual and developmental disabilities (N=13) 17 8.1 Utilization of hospital admission and emergency department at 6-month follow-up..... 17 8.2 Clinician, parent and teacher ratings............................. 17 8.3 Treatment goals at 6-month follow-up: Family/caregiver goal ratings and attributions for change (N=13)........................................ 17 3

9 Outcome-III: Concurrent validity of the CAFAS for children and youth with intellectual and developmental disabilities (N=21) 22 V Conclusions, Recommendations and Next Steps 24 10 Mental health needs of children and youth with intellectual and developmental disabilities 24 11 Preliminary look at effectiveness of the Dual Diagnosis Team services 24 12 Recommendations 25 13 Lessons learned and next steps 25 14 Knowledge Exchange Plan 26 VI Acknowledgements 27 References 28 List of Figures 1 Pervasive Developmental Disorder Distribution (n=21)................ 12 2 Family/Caregiver Treatment Goals for 21 Children and Youth with Developmental Disabilities and Mental Health Disorders................ 16 3 Clinician-Rated Change in Global Functioning Measures at 6-Month Follow-up (n=13) 19 4 Family/Caregiver Attributions for Improvement in Therapeutic Goals (n=13)... 21 5 Family/Caregiver Attributions for No Change in Therapeutic Goals (n-13)..... 23 List of Tables 1 Classification of 21 Consecutive Outpatients by Level of Intellectual Disability and Diagnosis of Pervasive Developmental Disorders (N=21)............... 11 2 Mental Health Diagnoses (N=21)............................. 13 3 Clinician, Parent and Teacher Global Ratings and Total Scores by Diagnosis of Pervasive Developmental Disorders (N=21)....................... 14 4 Child and Adolescent Functional Assessment Scale (CAFAS) Scores (N=21).... 15 5 Frequency of CAFAS Risk Behaviours: Youth s Functioning (N=21)......... 15 6 Clinical Global Impressions (CGI) Improvement Rating at 6-Month Follow-up... 17 7 Clinician-Rated Measures at Initial Assessment and 6-Month Follow-Up...... 18 8 Parent-Rated Measures at Initial Assessment and 6-month Follow-up........ 18 9 Teacher-Rated Measures at Initial Assessment and 6-month Follow-up....... 20 10 Family/Caregiver Goal Ratings at Initial Assessment and 6-Month Follow-up (N=13) 22 4

Part I Funding Program Evaluation Grant: ($14,977.30) Source: The Provincial Centre of Excellence for Child and Youth Mental Health at CHEO Grant term: Dec. 10, 2007 to May 16, 2008 5

Part II Introduction 1 Purpose of the program evaluation of The Dual Diagnosis Team, CHEO Mental Health Outpatient Services Despite the high prevalence of mental health disorders in children and youth with intellectual and developmental disabilities, there are few, if any, program evaluations to guide development of best practices in multimodal treatment. The purpose of the CHEO Dual Diagnosis Team Program Evaluation was to establish a sustainable process for assessment of the effectiveness of interdisciplinary services delivered by the Dual Diagnosis Team. Continuous assessment of clinical outcomes is necessary to ensure that services are meeting the needs of children, youth and families. To do this, clinical practice had to be fully integrated with the ongoing collection of quantifiable data for assessment, treatment, and review of progress and outcomes at six-month follow-up. In addition, three questions were addressed in a preliminary manner: 1. What are the mental health needs of children and youth living with developmental disabilities referred to a tertiary care children s hospital in Eastern Ontario (CHEO)? 2. Is there preliminary evidence of the effectiveness of interdisciplinary mental health outpatient services at 6-month follow-up? 3. Is there evidence for the utility and/or concurrent validity of the provincially-mandated outcome tool, the Child and Adolescent Functional Assessment Scale (CAFAS)[Hodges, 2003], for children and youth with developmental disabilities? 2 Overview of The CHEO Dual Diagnosis Team and population served The CHEO Dual Diagnosis Team is an interdisciplinary team of professionals who provide mental health outpatient services to children and youth living with developmental disabilities. The team addresses complex mental health needs in a target population of children and youth up to 18 years of age with Intellectual Disability (cognitive abilities at or below the 2nd percentile), or Pervasive Developmental Disorders (eg. Autism, Asperger s Disorder), or both. Current team composition includes one child psychiatrist (0.8 FTE), one psychologist (0.7 FTE), one full-time nurse, one full-time social worker, two occupational therapists (total 0.9 FTE), and one speech/language pathologist (0.5 FTE). The Dual Diagnosis Team currently serves 111 active outpatients. A snapshot review of active outpatients (86) being seen by the team in May, 2007 indicated that 95% received treatment with psychoactive medications using advanced psychopharmacological interventions and close medical monitoring [Ad-Dab bagh and Flintoff, 2007]. In addition to psychiatric care, outpatients were followed by at least one other team member, and 65% of our active clients had received or were receiving specialized assessments and/or therapeutic interventions from two or more of the team s services including Psychology, Nursing, Social Work, Occupational Therapy (OT), and Speech/Language Pathology (SLP). Interventions can include individual, family and sibling therapy, cognitive-behaviour therapy, time-limited occupational therapy, time-limited speech-language therapy, and social skills training groups offered by SLP and OT. Consultation/liaison and collaborative care with our partners in education and developmental services is often a major component of treatment. Our model of service delivery has evolved to include a comprehensive (5 hour) interdisciplinary mental health assessment conducted by the psychiatrist and at least one other team member, depending on the 6

child/youth and family s identified needs. To facilitate this comprehensive assessment, a standard battery of parent, teacher and clinician-rated measures was established in July, 2007. The family also identifies three qualitative goals they would like to achieve by working with our team, and rates their current level of goal attainment. In order to achieve stabilization as quickly as possible and to optimize the well-being of the child/youth and family, all possible services that may be provided by the team as well as other agency resources that may be beneficial are explored during the initial assessment session. Feedback is provided and a complete individual treatment plan is formulated by the team and the family during the latter part of the initial assessment session on the same day. Internal referrals to other team members are also subsequently made on an ongoing basis as needed. Given the lifelong nature of developmental disabilities, the Dual Diagnosis Team is also committed to providing continuity of care. Hence longer-term care is provided when needed to achieve stabilization and prevent relapse and recurrences. 3 Related research An estimated 50% of children with intellectual disabilities have comorbid psychiatric disorders at the time of identifying them to have ID[Tonge, 2007]. Fifty to 60% of children with Autism Spectrum Disorders (ASD) will develop a psychiatric illness in their childhood[howlin, 2007]. Around adolescence, up to one in three youth with ASD show extreme symptom aggravation[gillberg, 2007]. There is an increasing focus on the difficulties of developing and maintaining responsive community services for people with intellectual disabilities (ID) and either chronic health problems or persistent mental illness or severe and disruptive behaviour problems[jacobson, 2007]. Mental health services are essential in order to support these community services. However, there are few, if any, program evaluations to guide the development of interdisciplinary teams in treatment of mental health disorders in children and youth with developmental disabilities. 7

Part III Methodology 4 Design, sample size and timing of data collection A program evaluation database was established to include pre-treatment assessment data, service delivery information, and 6-month follow-up data. Approval from the CHEO Research Ethics Board was obtained for implementation of the database on October 17, 2007 and approval for additional entry of process variables related to service delivery on March 25, 2008. The ongoing database will include all children and youth seen since July, 2007, when the standardized assessment battery was implemented. For this report, 21 consecutive children and youth seen July, 2007 through February, 2008 will be included, along with outcomes at 6-month follow-up for 13 of them. 5 Data collection 5.1 Standard Assessment Battery at initial assessment 5.1.1 Parent-reported measures, identification of treatment goals and goal scaling Parent measures were collected in a standard group orientation session prior to their child/youth s comprehensive assessment. The Dual Diagnosis Team Intake Questionnaire includes demographic information, medical history including past and current medications, ongoing services and resources, school information, previous hospitalizations for mental health, visits to the Emergency Department for emotional or behavioural issues, and telephone calls to 9-1-1 for support in managing their child/youth. In addition, the parent is asked: Please list the top two or three goals you would like your child/youth and family to achieve by working with our team. For goal scaling for each identified goal, the parent was asked: On a scale from 1 to 10 where higher numbers indicate more improvement and better progress, and lower numbers indicate more difficulties, how far along are you in achieving goal number 1?. Their current goal attainment rating was circled on a 10 point scale. These treatment goals were again reviewed and confirmed at the initial comprehensive assessment. Parent ratings were also collected on three questionnaires: Adaptive Behaviour Assessment System Second Edition Parent Form[Harrison and Oakland, 2003]; Conners Parent Rating Scale Revised: Long (CPRS-R:L)[Conners, 1997]; and the Developmental Behaviour Checklist Primary Carer Version (DBC-P)[Einfeld and Tonge, 2002]. 5.1.2 Teacher-reported measures Teachers completed two questionnaires prior to the initial assessment: Conners Teacher Rating Scale- Revised: Long (CTRS-R:L) [Conners, 1997]; Developmental Behaviour Checklist Teacher Version (DBC- T) [Einfeld and Tonge, 2002]. 5.1.3 Clinician-reported measures Based on the reviews of the obtained parent and teacher questionnaires, the child s health record including previous medical reports, previous psychological assessments, information obtained from other agencies involved, and the initial comprehensive assessment conducted with parents/caregivers and the child/youth (a 3-hour interview session followed by a 2-hour feedback and planning session), clinicians as specified below completed the following measures: 1. DSM-IV-TR [DSM, 2000] multiaxial diagnoses including the score on the Global Assessment of Functioning (GAF) Scale [Endicotte et al., 1976] (completed by psychiatrist). GAF scores range 8

from 1 to 100 with lower scores indicating greater impairment in functioning and more serious symptoms. 2. The Childhood Autism Rating Scale (CARS) [Schopler et al., 1988] (completed by psychiatrist or psychologist). The CARS requires the clinician to rate 15 categories of behaviour associated with autism. Scores range from 15 to 60 with higher scores indicating more symptoms associated with autism. A cut-off score of 30 is correlated with the presence of autism. 3. Clinical Global Impressions (CGI) Severity of Illness [National Institute of Mental Health, 1970] (completed by psychiatrist). CGI Severity ratings range from 1(Not at all Ill) to 7(Among the most Extremely Ill Patients). 4. Child and Adolescent Functional Assessment Scale (CAFAS) [Hodges, 2003] (completed by any team member present at comprehensive assessment with current CAFAS reliability certification). The CAFAS is a global outcome measure based on eight subscales (see Table 4) of level of functioning in domains of School/Work, Home, Community, Behaviour Toward Others, Moods/Emotions, Self-Harmful Behaviour, Substance Use, and Thinking. Each subscale is scored 0 (No or minimal impairment), 10 (Mild Impairment), 20 (Moderate Impairment), or 30 (Severe Impairment). Subscale scores are added to obtain a CAFAS Total Score. The CAFAS has been implemented in Ontario as a quality assurance and outcomes measure for children s mental health [Barwick et al., 2004]. 5.1.4 Treatment data Developmental services and resources (eg. Special Services at Home) already being provided for the child/youth are recorded. Psychopharmacological treatment prescribed at the initial assessment session is recorded. Referrals to other team members or other CHEO medical services, and referrals to other developmental service providers are recorded. 5.2 Six-Month Follow-Up 5.2.1 Parent-reported measures, goal attainment scaling, and interview for attributions for change (or no change) in treatment goal attainment At the six-month follow-up session, parents were interviewed for about 15 minutes by a team member currently providing services regarding the treatment goals they had identified at the initial assessment. Each identified goal was read to the parent. Then the staff stated: You rated how far along you were in achieving this goal as a [staff provides original rating from 1 to 10 ], where higher numbers indicate more improvement and better progress and lower numbers indicate more difficulties. How would you rate this goal today? After the parent/caregiver provided the follow-up rating, they were then asked: What do you think might account for this change from a [previous rating] to a [current rating]? OR if the goal rating stayed the same, the staff asked: What do you think accounts for your rating staying the same? The staff transcribed the parent/caregiver s responses. Subsequently, parents were asked whether they wished to identify any new goal for ongoing intervention. Parent ratings were also collected again at 6-month follow-up for two measures: CPRS-R:L, and the DBC-P. 5.2.2 Teacher-reported measures Teacher ratings were collected again at 6-month follow-up for two measures: CTRS-R:L and the DBC-T. 5.2.3 Clinician-reported measures 1. DSM-IV-TR [DSM, 2000] multiaxial diagnoses including the score on the Global Assessment of Functioning (GAF) Scale [Endicotte et al., 1976] (completed by psychiatrist) 9

2. Clinical Global Impressions (CGI) Improvement Rating [National Institute of Mental Health, 1970] (completed by psychiatrist) 3. Child and Adolescent Functional Assessment Scale (CAFAS) [Hodges, 2003] (completed by any team member providing care at 6-month follow-up with current CAFAS reliability certification) 5.2.4 Treatment data Psychopharmacological treatment status at 6-month follow-up is recorded, along with any medications that were tried, discontinued, and the reason for discontinuation. Direct face-to-face care provided by all team members (or trainees under a team member s supervision) is also recorded. In addition, any hospitalizations for mental health, visits to the Emergency Department, and parent/caregiver calls to 9-1-1 for assistance that have occurred within the past 6 months are recorded. Change in school status is also recorded. 6 Limitations of evaluation methods One limitation of the current evaluation method is the fact that service providers are directly interviewing participants regarding their attributions for improvement or lack of improvement in treatment goals. While this ensures a feasible process that can be sustained, responses may be biased by the demand characteristics inherent in providing feedback to a clinician that is still providing services. A second limitation for the current report is the small number of participants. Although this limits any conclusions that can be made at this time, this is an ongoing database with capacity for continuous evaluation of services pending additional supports for data entry and analyses. A third limitation is the lack of inter-rater reliability information for the DSM-IV-TR multiaxial diagnoses made by the team psychiatrist. Finally, establishing treatment and process variables that may be contributing to outcomes is still in an early stage of development. Other than medication changes, only global indicators of type of service delivered and time spent in service delivery is recorded at this time. 10

Part IV Results 7 Outcome-I: The mental health needs of children and youth with intellectual and developmental disabilities (N=21) 7.1 Gender, age and situation As expected from epidemiological data on Autism Spectrum Disorders and on psychiatric disorders complicating Intellectual Disabilities, males were overrepresented. In the current group of 21 consecutive new outpatients seen since July, 2007, there are 18 males (86%) and 3 females (14%). The mean age at time of assessment was 12 years 7 months, ranging from 6 years 7 months to 15 years 11 months. 19 children and youth were living at home with their families, one was in therapeutic foster care and another was living in a group home specialized for developmental disabilities. Eighteen children (86%) resided in Ottawa-Carleton, while three lived in surrounding counties (14%). With regard to school placement, 9 children and youth (43%) attended various special education programs in community schools, while 5 (24%) attended special education schools. Three children (14%) attended regular classes with the support of a full-time educational assistant. 7.2 Distribution of Intellectual Disabilities and Pervasive Developmental Disorders The distribution of Intellectual Disabilities and Pervasive Developmental Disorders (PDDs) in 21 consecutive children and youth seen since July, 2007 is presented in Table 1 and in figure 1. For 90% of the Table 1: Classification of 21 Consecutive Outpatients by Level of Intellectual Disability and Diagnosis of Pervasive Developmental Disorders (N=21) Intellectual Disability Autism PDDNOS No PDD Total % No Intellectual Disability 1 4 0 5 23.8 Borderline Intellectual Functioning 1 0 0 1 4.8 Mild Mental Retardation 1 0 4 5 23.8 Moderate Mental Retardation 2 0 2 4 19.0 Severe Mental Retardation 1 0 0 1 4.8 Mental Retardation-Severity Unspecified 4 0 0 4 19.0 R/O Mental Retardation 1 0 0 1 4.8 Total 11 4 6 21 % 52.4 19.0 28.6 children/youth, intellectual level was confirmed by previous psychological assessment. As indicated by the first two columns in Table 1 and in figure 1, 15 of 21 outpatients (71%) had confirmed diagnoses of Autistic Disorder (n=11) or Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS) (n=4). This is consistent with the snapshot of our services in May, 2007, where 64% of 86 active clients were diagnosed 11

Figure 1: Pervasive Developmental Disorder Distribution (n=21) with an Autism Spectrum Disorder (ASD). Nine outpatients with Autism (82%) also had or were suspected to have intellectual disability. In this group of 21 outpatients, none of the four children/youth diagnosed with PDDNOS had an intellectual disability. As shown in Table 1, 28.6% of outpatients (6/21) did not present with intellectual disability. A substantial subgroup (4/21) i.e. 19% were diagnosed with Mental Retardation Severity Unspecified where degree of intellectual disability could not be confirmed. 7.3 Mental Health Diagnoses Distribution of DSM-IV disorders confirmed after the interdisciplinary assessment and categorized by diagnosis of Pervasive Developmental Disorders is presented in Table 2. Due to the small number of outpatients across levels of mental retardation, mental health needs cannot be examined in this way yet. For three children/youth, assessment of psychosis or Bipolar Disorder was requested; these diagnoses were ruled out after the initial assessment. To date, even in our preliminary group of 21 children/youth, a consistent treatment need has already emerged for children/youth with autism (n=11) referred for mental health services: 6 of the 11 children/youth needed intensive intervention for Stereotypic Movement Disorder with Self-Injurious Behaviour, including biting, hitting, scratching and pinching themselves. Across the group of 21 children/youth, anxiety disorders are evident. Children/youth with Intellectual Disabilities are 2.5 times more likely to suffer from anxiety disorders [Emerson, 2003]. Dysthymic Disorder is also evident in Table 2. Children and adolescents with ID are at up to 8 times the risk of major affective disorders [Clarke, 2007]. Continued assessment and monitoring for additional mental health disorders was planned for several other children/youth regarding Bipolar Disorder, Post-traumatic Stress Disorder, Nightmare Disorder, Panic Disorder and other mood and anxiety disorders. Regarding Attention-Deficit Hyperactivity Disorder, on our service this diagnosis is made in children/youth who have PDDs even though the DSM-IV does not permit this[dsm, 2000]. This is done to flag the need for treatment of comorbid features of ADHD in this population. Epidemiologically, at least 32% of ID children/youth are comorbid with ADHD [Tonge, 12

Table 2: Mental Health Diagnoses (N=21) Pervasive Developmental Disorder Autism (n=11) PDD-NOS (n=4) Not Present (n=6) Diagnosis n Diagnosis n Diagnosis n Stereotypic Movement Disorder with Self-Injurious Behaviour 6 ADHD Hyperactive-Impulsive 1 Reactive Attachment Disorder Tourette s Disorder 1 Dysthymic Disorder 1 Obsessive-Compulsive 1 Disorder Anxiety Disorder NOS 1 Anxiety Disorder NOS 1 ADHD Combined Type 1 Adjustment Disorder 1 Oppositional-Defiant 1 Dysthymic Disorder 1 Disorder Feeding Disorder of Early 1 Gender Identity Disorder 1 Childhood Medication-Induced Movement Disorder (Akathesia) 1 Stereotypic Movement Disorder (without Self-Injurious Behaviour) 1 Tic Disorder NOS 1 2 2007]. In the group of 21 consecutive outpatients, 1 of 6 children/youth with ID without a Pervasive Developmental Disorder was diagnosed with ADHD, but we expect this to increase. Statistical analyses of clinician, parent and teacher global ratings and total scores presented in Table 3 across diagnoses of Pervasive Developmental Disorders were not done because of small samples in each group. However, visual inspection of the CARS Total Scores indicates the severity of autistic symptoms present in the group diagnosed with Autistic Disorder (mean = 43.86) relative to the group diagnosed with PDDNOS (mean = 27.50) or Intellectual Disabilities without PDD (mean = 25.33). The burden of suffering evident both at home and at school for all 21 children/youth is indicated by the clinically significant mean total scores on teacher and parent versions of both the Conners scales and the Developmental Behaviour Checklist. Further evidence of the functional impairment of these children/youth is evident in parent ratings of adaptive behaviour on the ABAS-II and on clinician ratings on the GAF and the CAFAS presented in Table 3 across diagnoses of PDD. Tables 4 and 5 include CAFAS subscales and risk factors for the entire group. 13

Table 3: Clinician, Parent and Teacher Global Ratings and Total Scores by Diagnosis of Pervasive Developmental Disorders (N=21) Pervasive Developmental Disorder Autism (n=11) PDD-NOS (n=4) Not Present (n=6) n Mean SD n Mean SD n Mean SD DSM-IV GAF Score (a) 11 26.27 13.76 4 45.75 18.89 6 41.17 12.50 CGI Severity (b) 11 4.82 1.25 4 3.75 1.26 6 4.50 0.55 CARS Total Score (c) 11 43.86 6.98 4 27.50 1.78 6 25.33 2.18 CAFAS Total Score (d) 11 138.18 44.00 4 105.00 42.03 6 95.00 36.19 ABAS-II Parent Form GAC (e) 11 44.45 6.31 4 65.25 13.84 6 57.17 12.84 CPRS-R:L Global Index: Total (f) 11 76.00 12.12 4 72.50 9.47 6 75.17 14.99 CTRS-R:L Global Index: Total (g) 10 81.70 9.44 3 66.00 9.64 4 90.00 0.00 DBC-P TBPS (h) 11 82.82 20.02 4 59.50 27.36 6 55.00 28.27 DBC-T TBPS (i) 10 80.30 20.73 3 36.67 13.50 4 44.50 23.52 (a) DSM-IV-TR Axis V Global Assessment of Functioning Scale (Range: 1-100; lower scores = greater impairment) (b) Clinical Global Impressions Severity of Illness (Range: 1 Not at all Ill to 7 Among the most Extremely Ill Patients ) (c) Childhood Autism Rating Scale (Range: 15-60; higher scores = more behaviours associated with autism) (d) Child and Adolescent Functional Assessment Scale (Range: 0 to 240; higher scores = greater impairment) (e) Adaptive Behavior Assessment System-Second Edition, Parent Form. General Adaptive Composite Standard Score (f) Conner s Parent Rating Scale-Revised: Long Version, T score (higher scores = more symptoms) (g) Conner s Teacher Rating Scale-Revised: Long Version, T score (higher scores = more symptoms) (h) Developmental Behaviour Checklist- Primary Carer Version, Total Behavior Problem Score (Cut-off = 46) (i) Developmental Behaviour Checklist- Teacher Version, Total Behavior Problem Score (Cut-off = 30) 7.4 Phenomenological analysis of family/caregiver treatment goals (N=21) Families were asked to identify their top two or three goals, and all but one family identified three goals, for a total of 62 therapeutic goals. Phenomenological content analysis of treatment goals was conducted by Faizah Visram, CHEO Psychology Intern. Eleven goal themes were identified and every treatment goal was then classified according to thematic content. Frequencies of each of the 11 goal themes are presented in Figure 2. Eight of the 11 goal themes also include more specific subthemes that are also coded if identified. However, analysis of goals by subthematic content will not be possible until a much larger number of children/youth have been seen. The goal theme Improve behaviour other than Aggression involves the largest number and broadest range of subthemes that specify the more specific behaviours targeted by the family for improvement, including: hyperactivity; tantrums/anger; compliance; impulsive behaviour; sustaining attention; eating; sleep; and sensory sensitivities. The goal theme Decrease Aggression includes specific subthemes coded if families specified aggression toward both self and others, aggression toward others, or aggression toward self (Self-injurious behaviour). 14

Table 4: Child and Adolescent Functional Assessment Scale (CAFAS) Scores (N=21) CAFAS Scale (a) N Mean SD School 21 23.33 10.65 Home 21 20.48 10.71 Community 21 1.90 6.02 Behavior Toward Others 21 23.81 7.40 Moods/Emotions 21 22.38 6.25 Self-Harmful Behaviour 21 10.48 9.73 Substance Use 21 0.00 0.00 Thinking 21 16.67 11.11 Total Score (b) 21 119.52 44.44 Material Needs (c) 19 0.53 2.29 Family/Social Support (c) 19 4.21 6.92 (a) Scale scores range from 0 to 30; higher scores indicate greater functional impairment. (b) CAFAS Level of Overall Dysfunction for Total Scores of 100 130: Youth likely needs care which is more intensive than outpatient and/or which includes multiple sources of supportive care. (c) Caregiver s Resources Scales are not included in Total Score for youth. Table 5: Frequency of CAFAS Risk Behaviours: Youth s Functioning (N=21) Yes No Suicidality 2 19 Harmful to Others or Self 12 9 Runaway Behaviour 0 21 Psychotic or Organic Symptoms 7 14 Severe Substance Use 0 21 15

Figure 2: Family/Caregiver Treatment Goals for 21 Children and Youth with Developmental Disabilities and Mental Health Disorders * 62 goals identified by 21 families/caregivers. 16

8 Outcome-II: Preliminary effectiveness data for an interdisciplinary mental health outpatient team at 6-month follow-up for children and youth with intellectual and developmental disabilities (N=13) 8.1 Utilization of hospital admission and emergency department at 6-month follow-up Three children/youth in the current follow-up group had previous hospital admissions for mental health and behavioural issues. Although the current follow-up group is a small sample, none of them needed admission during the follow-up period. Four children were seen at the Emergency Department for emotional and behavioural problems in the six months that preceded Dual Diagnosis Team services; however, there were no further visits at six-month follow-up. 8.2 Clinician, parent and teacher ratings To date, 13 of the 21 children and youth have been seen for six-month follow-up since beginning in July, 2007. Psychiatrist Clinical Global Impressions Improvement ratings (Table 6) at six-month follow-up indicated that 10 of the 13 outpatients (77%) were rated much or very much improved; 3 were rated minimally improved or no change (23%). GAF scores also demonstrated significant improvement (Table Table 6: Clinical Global Impressions (CGI) Improvement Rating at 6-Month Follow-up CGI Improvement Frequency Percent Cumulative Percent Very Much Improved 1 7.69 7.69 Much Improved 9 69.23 76.92 Minimally Improved 2 15.38 92.31 No Change 1 7.69 100.00 Minimally Worse 0 0.00 Much Worse 0 0.00 Very Much Worse 0 0.00 Total 13 100.00 7, Figure 3). Team members ratings on the CAFAS indicated clinically significant improvement (a decrease of 20 or more points on the CAFAS Total Score) in a decrease in mean Total Score of 42 points (Figure 3). A number of CAFAS subscales also indicated significant improvement in functioning in specific domains, notably School, Behaviour Toward Others, Moods/Emotions and Self-Harmful Behaviour (Table 7). Questionnaire results are presented in Tables 8 & 9 but are more difficult to interpret due to smaller numbers of returned questionnaires. However, clinically significant change (17 points; Einfeld and Tonge, 2002) is not evident on the Total Behaviour Problem Score (TBPS) of the Developmental Behaviour Checklist (DBC-P) completed by 8 parents/caregivers. 8.3 Treatment goals at 6-month follow-up: Family/caregiver goal ratings and attributions for change (N=13) A multivariate analysis of change from assessment to follow-up in three treatment goals (conducted on ratings of each goal for the 12 participants who identified 3 goals) was highly significant (Hotelling s Trace = 3.84, F(3.9) = 11.52, p<.002). Mean ratings for Goal 1, Goal 2 and Goal 3 were all significantly higher (improved) at follow-up (see Table 10). For each goal theme category, mean goal ratings at initial 17

Table 7: Clinician-Rated Measures at Initial Assessment and 6-Month Follow-Up Initial Assessment 6 Month Follow-up n Mean SD Mean SD t p * DSM-IV GAF score 13 30.31 15.70 45.15 16.20-4.33 0.00 CAFAS Scales School 13 25.38 9.67 17.69 12.35 3.33 0.01 Home 13 23.08 9.47 18.46 12.14 1.72 0.11 Community 13 3.08 7.51 1.54 5.55 0.56 0.58 Behaviour Toward Others 13 25.38 6.60 15.38 9.67 4.42 0.00 Moods/Emotions 13 23.08 6.30 16.15 9.61 3.96 0.00 Self-Harmful Behaviour 13 13.08 9.47 6.15 10.44 2.92 0.01 Substance Use 13 0.00 0.00 0.00 0.00 Thinking 13 18.46 11.44 13.85 13.25 1.90 0.08 Total Score 13 131.54 40.59 89.23 61.57 3.96 0.00 * Significant results are in bold-face. Table 8: Parent-Rated Measures at Initial Assessment and 6-month Follow-up Initial Assessment 6 Month Follow-up Parent-Rated Measure n Mean SD Mean SD t p * DBC-P Scales Total Behaviour Problem Score 8 77.88 29.81 74.00 25.44 0.51 0.62 Disruptive/Antisocial 8 26.13 11.51 20.88 6.96 1.91 0.10 Self-Absorbed 8 27.00 13.24 24.38 9.47 0.66 0.53 Communication Disturbance 8 10.25 3.33 9.00 3.63 1.36 0.22 Anxiety 8 8.00 3.85 6.50 3.96 1.50 0.18 Social Relating 8 7.50 3.38 8.13 3.72 0.45 0.67 Autism Screening Algorithm 8 31.25 12.48 23.63 7.56 2.33 0.05 CPRS-R:L Scales Oppositional Behaviour 8 68.75 14.22 63.75 17.19 1.03 0.34 Cognitive Problems-Inattention 8 67.88 11.28 70.25 9.88-1.09 0.31 Hyperactivity 8 82.00 9.00 18.12 9.98 0.55 0.60 Anxious-Shy 8 71.63 15.90 69.38 15.77 1.13 0.30 Perfectionism 8 62.63 12.27 57.63 14.83 1.37 0.21 Social Problems 8 71.88 14.93 80.50 14.09-3.37 0.01 Psychosomatic 8 58.38 16.59 50.38 13.53 1.89 0.10 ADHD Index 8 73.13 5.96 73.00 9.44 0.04 0.97 Global Index-Restless Impulsive 8 80.38 5.97 72.75 13.51 2.06 0.08 Global Index-Emotional Lability 8 72.13 11.41 66.00 13.73 1.27 0.24 Global Index-Total Score 8 80.50 4.81 75.38 6.30 1.55 0.16 DSM-IV Inattentive 8 61.63 18/49 71.13 10.60-1.64 0.14 DSM-IV Hyperactive Impulsive 8 72.50 21.88 78.63 10.80-0.91 0.39 DSM-IV Total 8 66.00 15.75 76.50 10.97-1.78 0.12 * Significant results are in bold-face. 18

Figure 3: Clinician-Rated Change in Global Functioning Measures at 6-Month Follow-up (n=13) 19

Table 9: Teacher-Rated Measures at Initial Assessment and 6-month Follow-up Initial Assessment 6 Month Follow-up Teacher-Rated Measure n Mean SD Mean SD t p * DBC-T Scales Total Behaviour Problem Score 8 65.13 29.14 55.25 25.84 1.34 0.22 Disruptive/Antisocial 8 21.75 9.85 17.88 9.46 1.20 0.27 Self-Absorbed 8 23.13 14.00 19.75 11.70 1.46 0.19 Communication Disturbance 8 7.88 5.08 8.50 2.93-0.47 0.65 Anxiety 8 4.13 3.18 3.38 2.62 1.03 0.34 Social Relating 8 7.88 4.09 5.63 2.39 1.64 0.15 CTRS-R:L Scales Oppositional Behaviour 6 70.17 16.25 60.67 15.69 1.16 0.30 Cognitive Problems-Inattention 6 65.67 8.12 59.50 11.54 1.43 0.21 Hyperactivity 6 72.33 15.63 75.83 11.74-0.52 0.63 Anxious-Shy 6 69.67 14.56 58.67 12.37 3.08 0.03 Perfectionism 6 67.33 10.46 61.17 8.57 1.57 0.18 Social Problems 6 71.50 18.69 60.50 15.06 2.17 0.08 ADHD Index 6 60.50 15.06 69.83 14.69 1.66 0.16 Global Index-Restless Impulsive 6 76.67 11.02 69.00 12.79 1.67 0.16 Global Index-Emotional Lability 6 80.33 14.22 68.17 9.13 1.60 0.17 Global Index-Total Score 6 85.33 6.68 70.67 12.19 5.78 0.00 DSM-IV Inattentive 6 66.17 11.05 62.50 11.22 1.19 0.29 DSM-IV Hyperactive Impulsive 6 73.00 7.29 75.50 15.00-0.38 0.72 DSM-IV Total 6 65.83 18.02 69.83 14.29-0.62 0.56 * Significant results are in bold-face. assessment and six-month follow-up are also shown in Table 10. Student t-tests for each goal theme that was identified by at least 5 families/caregivers indicated significant improvement in ratings for Decrease Aggression (n=7) and Improve Behaviour other than Aggression (n=8). Ratings for Decrease anxiety (n=5) did not indicate significant improvement, although goal ratings are in a positive direction and the sample size is small. Visual inspection also indicates that the largest and most dramatic change in goal attainment was evident on the goal to Receive/Clarify Diagnosis. Family/caregiver attributions for their goal attainment ratings at six-month follow-up were analyzed by phenomenological content analysis conducted by Faizah Visram, CHEO Psychology Intern. Nine attribution themes emerged and were then used to code all of the reasons that families/caregivers provided for progress or lack of progress in their treatment goals. Families/caregivers sometimes provided two unique attributions for progress in a treatment goal, and occasionally three unique attributions. All unique attribution themes were coded for each goal. In fact, 7 attributions were linked to improvement as shown in Figure 4. For the attribution theme Specific Therapeutic Intervention, a variety of interventions were felt to be therapeutic by families, including some implemented by the Dual Diagnosis Team, for example, occupational therapy intervention, attachment-based interventions, and CBT; and some implemented by other providers. The most frequently occurring single attribution for progress was medication optimization. As shown in Figure 5, families provided two attributions for lack of progress in treatment goals: patient characteristics and family stress. Patient characteristics cited as barriers to treatment goals included distractibility and low self-efficacy. 20

Figure 4: Family/Caregiver Attributions for Improvement in Therapeutic Goals (n=13) 21

Table 10: Family/Caregiver Goal Ratings at Initial Assessment and 6-Month Follow-up (N=13) Assessment 6 Month Follow-up Measure n * Mean SD Mean SD t p ** Goal Theme Decrease Aggression 7 2.29 0.91 3.71 0.99-2.50 0.05 Improve Behavior other than Aggression 8 2.38 1.41 5.06 2.38-3.45 0.01 Decrease Anxiety 5 5.06 2.38 6.40 2.51-1.94 0.12 Improve Communication Skills 2 2.25 1.06 3.75 3.18 Increase Independence 3 2.83 3.18 3.83 2.36 Improve Mood 2 2.00 0.00 4.00 1.41 Receive/Clarify Diagnosis 3 1.33 0.58 8.67 1.15 Optimize Medication 2 3.00 2.83 6.00 0.00 Optimize Learning 2 5.50 0.71 5.50 0.71 Improve Social Adjustment 1 1.00 0.00 5.00 0.00 Decrease Family Stress 1 1.00 0.00 1.00 0.00 Goal Priority Goal 1 12 2.62 1.42 4.33 1.57-4.48 0.001 Goal 2 12 2.58 1.51 5.96 2.38-4.10 0.002 Goal 3 12 2.38 1.77 4.58 2.75-2.76 0.018 Multivariate test of Time (Hotelling s Trace) 12 F=11.52 0.002 * Total number of parents/caregivers who identified this treatment goal. ** Significant results are in bold-face. 9 Outcome-III: Concurrent validity of the CAFAS for children and youth with intellectual and developmental disabilities (N=21) With regard to the concurrent validity of the clinician-rated CAFAS for this population of children/youth, correlations with the CAFAS Total Score were examined for: 1. parent (DBC-P) and teacher (DBC-T) ratings on the Developmental Behaviour Checklist; and 2. the ABAS-II General Adaptive Composite standard score obtained from parent ratings. The CAFAS Total Score was significantly correlated with parent ratings for 21 children/youth on the DBC- P for the Total Behaviour Problem Score (TBPS) (r =.445, p<.043), DBC-P Self-Absorbed subscale (r =.562, p<.008), and the DBC-P Autism Screening Algorithm (r =.486, p<.026). Teacher ratings on the DBC-T were available for 17 children/youth. CAFAS Total score was significantly correlated with the DBC- T TBPS (r =.565, p<.018) and subscales for Disruptive/Antisocial (r =.492, p<.045), Self-Absorbed (r =.612, p <.009), and Social Relating (r =.663, p <.004). Finally, parent ratings of global adaptive behaviour on the ABAS-II were negatively correlated with Total Scores on the CAFAS (r = -.45, p<.04). This indicates that clinicians global scores for level of impairment on the CAFAS are associated with greater deficits in adaptive skills reported by parents across conceptual, social and practical skill domains measured by the ABAS-II. 22

Figure 5: Family/Caregiver Attributions for No Change in Therapeutic Goals (n-13) 23

Part V Conclusions, Recommendations and Next Steps 10 Mental health needs of children and youth with intellectual and developmental disabilities With the establishment of an ongoing database, Dual Diagnosis Team services for children and youth with intellectual and developmental disabilities are well poised to contribute to the study of multimodal interventions for this population and address the void in available treatment [Matson and Loud, 2007]. Our very preliminary work suggests that the mental health needs of this population are especially acute in early adolescence: the mean age at initial assessment for mental health services was 12 years 7 months, coinciding with the onset of puberty, and escalation of symptoms in many youth with developmental disorders. Aggression and self-injury is the most frequent reason for referral in this population [Hurley et al., 2007]. However, comprehensive mental health assessment is necessary in order to accurately diagnose and treat the aggressive behaviour [Russell and Tanguay 1996; Volkmar 1996]. The most common relationship found in the population of children and adults with Intellectual Disabilities is the link between aggression, anger and mood symptoms of sadness and depression [Reiss and Rojahn, 1993; Fletcher et al., 2007]. In our current limited group, two children were newly diagnosed and treated for Dysthymic Disorder after the initial assessment session, while for several other children, continued assessment of mood disorders was indicated. A number of these children/youth were also diagnosed with anxiety disorders and multimodal treatments were begun. Both level of mental retardation and diagnosis of pervasive developmental disorder have been associated with greater intensities of self-injurious behaviour (SIB) and stereotyped behaviour [Rojahn et al., 2001]. In our preliminary work, six of 11 youth who presented with autism were diagnosed with Stereotypic Movement Disorder with Self-injurious Behaviour and this was a key treatment target. 11 Preliminary look at effectiveness of the Dual Diagnosis Team services Preliminary evidence for the effectiveness of Dual Diagnosis Team services has been demonstrated especially in terms of reduced visits to the CHEO Emergency Department and clinician s global ratings of outcomes, including the CAFAS. It also appears that the CAFAS is a sensitive global outcome measure of change for this population. In providing family-centred care to these highly disadvantaged children and youth, the goals that families and caregivers are hoping to achieve must be addressed. Family/caregiver s ratings of progress toward goal attainment have also demonstrated to us that our services are relevant and evolving to meet their needs over the course of six months of working together. Most frequently reported immediate goals typically included stabilization of aggression, improvement of behaviour problems such as hyperactivity and noncompliance, and decreasing their child/youth s anxiety. Families also reported longer-term goals including increasing their child/youth s capacity for independence and improving specific skills, especially social skills and communication skills. Finally, some families identified a need to receive or clarify diagnosis and a need for medication review and consultation. Attributions of families/caregivers for progress and lack of progress have provided us with rich information about what works and what may be barriers for progress. It is clear that families value the complex pharmacological interventions that have been provided. A majority of these youth were already treated with psychoactive medications that were either problematic or not perceived to be effective. For a number of children/youth diagnosed with Stereotypic Movement Disorder with Self-injurious Behaviour, pharmacological treatment with the opiate antagonist, Naltrexone, in combination with the D2-blocker risperidone has been introduced with some success. Published data 24

suggests that approximately 40% of children and adults with SIB are positive responders to Naltrexone and the side effect profile is low [Bodfish, 2007]. Our clinical impressions suggest that when some stabilization of SIB can be achieved through psychopharmacological intervention, the child/youth is then more able to benefit from behavioural intervention and to participate in other therapeutic interventions and programming. Families/caregivers have also attributed the specialized interventions that our team provides as a factor in the gains that have been made. Positive changes in schooling, including change of schools, educational placements, and programming have also been identified. In some cases, team members have assisted with these changes through consultation/liaison, and in other cases these changes were initiated by the school or family. Understanding their child/youth s diagnosis, both the developmental diagnosis and the mental health diagnosis, has also been mentioned by 3 of the 13 families as a component of progress and a necessary step for establishing appropriate expectations for their child/youth and future planning. Families also cited the importance of parenting practices in their child/youth s progress, giving examples such as facilitating socialization opportunities for their child, increased parental patience, and providing more structure and routines. Family stressors and inherent characteristics of the child/youth were cited as barriers to progress for some treatment goals at 6-month follow-up. These barriers were reviewed by the team and ongoing follow-up is being provided in an effort to address these issues. 12 Recommendations With regard to the CAFAS, its utility as a global measure of outcome for children/youth with intellectual and developmental disabilities has been supported by current results. However, there have been some issues noted in this application. For example, when self-harmful behaviour (typically self-injurious behaviour in the current population) is scored at a moderate or severe level, the risk indicator for possible suicidality is automatically indicated in the results, even though it does not apply. Clinicians then manually remove this indicator from the results for the risk behaviours. Second, clinicians note the frequent need to use the exceptions coding since relevant behavioural descriptions are not always evident on the subscales when they are applied to this population. With regard to evaluation of clinical outcomes of service delivery, the current project supports the use of parent-identified treatment goals and goal attainment scaling to ensure relevance of treatment and approaches and monitor progress. While it is clear that families find treatment with medication and other specific therapeutic interventions helpful, more specific recommendations regarding effective interventions will be made in the future with greater numbers of participants. 13 Lessons learned and next steps Our current program evaluation and outcome activities do not consistently provide clarification of the unique contributions of the Dual Diagnosis Team services, other service providers and community agencies, the family, and the child/youth in gains that have been made. In order to address this, we plan to adopt a more comprehensive strategy to track team recommendations and specific interventions made by the team over six months of service. Given the unique importance in this population of children and youth of the symptom of aggression in general and self-injurious behaviour in particular, we will be considering the utility of highly specific assessment measures targetting these symptoms, such as the Behavioral Problems Inventory [Rojahn et al., 2001]. When a larger number of outpatients have been followed, family/caregiver s attributions for change will also be analyzed for specific goal themes to determine whether attributions differ depending on the specific treatment goal. Progress made related to specific types of interventions and services provided will also be assessed in future with greater numbers of participants. At present, we have funding for additional data entry and analyses until August 29, 2008. This will expand results of the preliminary information presented in this report. 25

14 Knowledge Exchange Plan Within our home organization, CHEO, we plan to present results of this program evaluation at CHEO Mental Health Research Rounds in the fall, 2008. We also plan to send an announcement regarding the availability of this report by request to all staff in the Mental Health Patient Service Unit. Presentations will also be offered to the Ottawa Children s Treatment Centre, Service Coordination, some regional partners in developmental services, and to the CHEO Autism Intervention Program. Finally, expanded results from August, 2008, may also be submitted in part or in whole to a journal specialized in intellectual and developmental disabilities. 26

Part VI Acknowledgements We would like to express our gratitude to the CHEO Mental Health Patient Service Unit, the CHEO Mental Health Research Department and the CHEO Research Institute for their material and technical support. This work was made possible with the financial support of the Provincial Centre of Excellence for Child and Youth Mental Health at CHEO. The continuation of this work beyond its initial mandate was made possible with the financial support of the CHEO Psychiatry Associates Research Fund. 27

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