Final Report of Activity February 21 st, 2006 to April 30 th, 2006 CHEO Grant 052 1- Title of Study: The prevalence of neuropsychiatric disorders in children and adolescents on an inpatient treatment unit: A pilot study (n=100) 2- Name of applicant: Robyn J. Stephens PhD. C. Psych. 3- Study Background: Childhood aggression has been shown to predict adolescent delinquency, academic difficulties, impoverished social ties, truancy, substance abuse, and has been estimated to account for up to 50% of all child and adolescent psychiatric referrals. 1-6 In a recently published international consensus statement on Attention Deficit Hyperactivity Disorder (ADHD) and disruptive behaviour disorders (DBDs), authors stated that many children with these and other comorbid psychiatric disorders do not receive appropriate treatment, despite the availability of effective therapies, due to the lack of specialists who can conduct accurate differential diagnostic assessments, including a structured clinical interview and multiple informants as part of the diagnostic procedure 7. The report concluded that it is insufficient simply to acknowledge that ADHD or DBD s are present but rather, for successful treatment planning it is crucial to systematically determine the presence of any and all mental health conditions. One is then in a position to establish which one is primary, and to formulate a rational treatment plan 7. Severe aggression, often threatening the safety of self and others is the most common reason for referral of well over 300 children and adolescents to inpatient treatment facilities of Youthdale Treatment Centres (YTC) in Toronto, Ontario. Youthdale s secure treatment unit operates as a quaternary level support for Schedule 1 hospitals across Ontario. A recently completed retrospective chart audit of approximately 400 admissions to this facility during the period 1991 2002 underscores the lack of information about the presence of any underlying neuropsychiatric disorder that may present with severe aggression and externalizing symptomatology. There is a strong sense among the clinical staff of the facility that current assessments underestimate the prevalence of underlying biological and neurological bases for the child s abnormal behavior. Considerable research data indicate a biological basis for many pediatric psychiatric disorders and compelling evidence has supported poor long-term outcomes in untreated cases 7.
2 4- Research Hypothesis:. From the data collected we planned to examine the following hypotheses: (1) We anticipated that the prevalence of neuropsychiatric disorders in a population sample drawn from a quaternary psychiatric service would be higher than that reported both for children in the general population (12-15%) and for children treated on an out-patient basis (25%) 8:9. (2) Children with neuropsychiatric, disorders were likely to be higher associated with aggression than children without neuropsychiatric disorders (3) The presence of neuropsychiatric disorders would be associated with greater impairment in function across multiple domains and (4) Neuropsychiatric disorders would be associated with sleep disruption. 5- Methodology: Subjects: Recruitment: Ethics approval was be obtained prior to the recruitment of subjects. The parents/guardians of all new admissions to the Emergency Acute Service Unit (ASU) and the Transitional Psychiatric Unit (TPU) at Youthdale Treatment Centres were invited to participate in the semi-structured interview and completion of questionnaires regarding their child s behaviour. Inclusion Criteria: Parents/guardians of males and females, ages 6:0-15:11 years; with a good command of the English Language, who were able and willing to cooperate with the study protocol. Exclusion Criteria: Child had known evidence of Severe Head Trauma and/or an Estimated IQ below 75. Clinical Assessments and Questionnaires: Clinical mental health diagnoses, according to DSM-IV 10 was confirmed by reviewing multiple sources of information including: questionnaire responses (parent/guardian), direct clinical observation of the child/adolescent and the diagnostic criteria derived from the results of a semi-structured clinical interview (DISC: Diagnositic Interview) conducted by a qualified trained clinician (RS). Parents and/or guardians were administered the Child and Adolescent Functional Assessment Scale 11 (CAFAS) to assess their child s degree of impairment in behavioural and emotional functioning, and be asked to complete questionnaires (taking approximately 1 hour) regarding their child s recent at home behaviour. Procedures: The parents/guardians of all new admissions to the Emergency Secure Treatment Unit (ESTU) and the Transitional Psychiatric Care Unit (TPCU) at Youthdale Treatment Centres (YTC) will be approached by a research assistant not directly involved in their care who will invite them to participate in the semi-structured interview and completion of questionnaires regarding their child s behaviour within 72 hours of their child being admitted to the unit(s). All parent/guardians will be asked to sign consents and the children/adolescents will be asked to sign assents.
3 Project progress summary: We are very pleased to report that our data collection was completed just prior to the beginning of the dates for his program development grant, which enabled us to get right to work on the scoring, standardization of scores and data entry for the 130 subjects in this study. There were a number of instruments for each participant, which made the preparation of the data for entry into the database a fairly lengthy and comprehensive procedure, however we did successfully gather full diagnostic interviews on 100 patients, with the majority of the multiple supporting behavioural questionnaires, self and parent report, as well as psychometric testing, on approximately 80% of participants. This represents a valid number of subjects for statistical purposes and should provide us with a good representation of the children and adolescents admitted to the inpatient units at Youthdale Treatment Centres. Once the data was prepared for entry (standardized where possible), an extensive data base was designed which included all the scales and subscales for each instrument. All items included in the data base were labelled and described to make interpretation of the statistical results more clear and understandable. The data was then entered for all 130 subjects, across each instrument. Scores were checked by two separate parties to ensure accuracy. Preliminary descriptive statistics and demographics were completed on the database to gain information that are being applied immediately to the organization and preparation of a Scientific Poster for presentation at the Ontario Association of Children s Aid Societies & Children s Mental Health Ontario Joint Conference on June 5-6 th, 2006. This study was selected by the Ontario Association of Children s Aid Societies & Children s Mental Health Ontario and we were given the honour of presenting a formal research poster. Based on the statistics we have begun to prepare powerpoint slides depicting in written and graphic format the demographics of this population, the source of the referrals to each of the inpatient units, the primary and secondary psychiatric diagnosis for subjects from each of the units and the prevalence and severity of additional clinical problems, such as sleep disorders, executive dysfunction and aggression. As this activity is nearing completion we will fine-tune the presentation and submit the slides to the publisher for printing in poster form. We will also prepare handouts of the poster for the audience attending the conference in June. We have also met with and clarified the formal, more advanced statistical questions we would like to explore with our statistician, Mr. David Kideckel. Mr. Kideckel has provided us with the initial statistics and is working on completing the more advanced procedures that will provide us with the information we need to complete the writing of the journal article. We will also be using the basic information written during this activity period to later expand and elaborate on in greater detail, with higher level statistics as we
4 prepare the journal article. We hope to complete the journal submission by June 30 th, 2006. List of activities started, completed and ongoing during the Activity Period of February 21 st, 2006 April 30 th, 2006 COMPLETED ACTIVITIES 1- The research assistant (Mr. Anthony Senzel) working on this study (CHEO Grant 052) was trained by the Principal Investigator (Dr. Robyn Stephens) in the scoring of the 100-130 sets of questionnaires and sets of tests that had administered to the parents and the children/adolescents participating in this study. 2- Once the complete set of data was scored, results were reviewed by Dr. Robyn Stephens for errors and omissions. 3- A desk top computer was purchased that would be efficient in running the statistical program for the data analysis and the software program SPSSPC was installed. Microsoft office was also installed to facilitate the creation of the Scientific Poster and the subsequent scientific paper. 4- Dr. Stephens worked with Anthony Senzel to develop and construct a comprehensive SPSSPC database format, with the appropriate data labels, descriptions and categorical descriptions. 5- Anthony Senzel was trained in the process of data entry by Dr. Stephens. Mr. Senzel then entered the full data sets for all subject files (130 subjects, 100 with completed interview data). 6- The primary hypothesis of the study was reviewed and clear, concise statistical questions were developed to present to the statistician, Mr. David Kideckel. 7- A meeting was held with Mr. Kideckel to discuss the format of the data the instruments used, the normative data available, and any adjustments or recalculations and re-entry of data that needed to be completed prior to analysis. 8- Mr. Senzel worked on the data base converting raw scores to scaled (standardized scores) in preparation for the data analysis. CURRENT ACTIVITIES 9- Discussion was held to determine the format and information to be displayed on the Scientific Poster presentation on June 4 th 6 th, 2006 for the Ontario Association of Children s Aid Societies & Children s Mental Health Ontario Joint Conference.
5 10- Preliminary analysis of the data was conducted to provide descriptive statistics and the initial information required to begin to develop the layout and design of the Scientific Poster (Preliminary results are later in this report). 11- Inquiries regarding the commercial printing of the Scientific Poster were made, and timelines were subsequently developed for data/slide submission and processing time, that would accommodate the June 4 th presentation date. 12- Initial layouts, data presentations and text requirements were discussed in preparation of presenting the results of the study in the format of a Scientific Poster. 13- Mr. David Kideckel is currently completing the more extensive and advanced statistical analysis on the data set which will directly address the stated hypothesis. Mr. Kideckel will also be preparing the statistical results in a written, formalized format suitable for inclusion in the scientific paper generated from the results of this study. ACTIVITIES SCHEDULED TO TAKE PLACE IN THE NEAR FUTURE 14- Based on the results of the final statistical analysis, a formal paper will be prepared for submission to a peer reviewed journal. As the corresponding sections are written for inclusion in the Scientific Poster preparation, this information will be used as a basis for the paper. The final submission of the paper to a journal is projected to occur in June 2006. Preliminary statistical results: Based on the 100 subjects for whom we have the full, comprehensive diagnostic clinical interview data available, the following preliminary descriptive statistics describe this interesting population of children and adolescents. Overall, the majority of referrals to the inpatient units at Youthdale Treatment Centres (YTC) originated from Community Sources (54%), and within this source there was a modestly higher number of referrals directly from regional Hospital or Clinics (27%) than from Children s Mental Health Agencies across Ontario (20%). Within this primary group of Community based referrals Parents was the subgroup with the highest number of children directly referred (37%), with Psychiatrists and Psychologists referring the second largest number of children (12%). Family physicians referred 2% of the inpatients, and the balance of the referrals emerging from local group home facilities. There was a greater balance of referrals across the subgroups comprising the local Hospitals and Clinics (1-8%) with a similar distribution of referrals originating from the eleven children s mental health agencies across Ontario (1-4%).
6 Of the 100 children analyzed, 35% were admitted to the Transitional Psychiatric Unit (TPU) while the majority (65%) were referred for admission to the secure unit (Acute Services Unit: ASU). Collectively, at the time of their admission to either the Transitional Psychiatric Unit (TPU) or the Acute Services Unit (ASU) the average child s age during this study period was 13.0 years ± 1.8, with the age of child entering the less secure TPU modestly lower than those admitted to the secure unit (ASU) ( 12.7 yrs ±1.8 vs. 13.1 yrs ±1.8 ). Interestingly, while there was a good balance of both males (51%) and females (49%), more males (3:2 ratio of males vs. females) were admitted to the Transitional Psychiatric Unit (TPU) while a majority of females (6:7 ratio of males vs. females) entered the Acute Services Unit (ASU). In terms of meeting DSMIV criteria for neuropsychiatric disorders, the following chart displays the percentage of both male and female inpatients who were admitted to both units that met full criteria based on the clinical interview data. It was interesting to observe that the more internalizing disorders, such as Obsessive Compulsive and Major Depressive Disorder, were found to be slightly elevated among the females, while Anxiety and Oppositional Defiant Disorder, the latter being the most highly represented diagnosis among all admissions, were relatively equally distributed. Tic Disorders, in support of clinical literature, was found to be more common among males, as well as Attention Deficit Hyperactivity Disorder (ADHD). Surprisingly, in contrast to common prevalence rates, the most severe form of pediatric aggressive behaviour, Conduct Disorder, was more frequently represented in the female population, a finding which lends itself to further investigations as to the nature of the aggression of these children and adolescents. Neuropsychiatric Disorder Percentage of Males meeting DSMIV Criteria (%) Percentage of Females meeting DSMIV Criteria (%) Percentage of All Admissions meeting DSMIV criteria Anxiety Disorder 33.3 30.6 33 % Obsessive Compulsive Disorder 11.8 14.3 13% Tic Disorder (including Tourette s) 27.5 10.2 19% Major Depressive Disorder 31.4 40.8 36% Attention Deficit Hyperactivity disorder 56.9 49 53 % Oppositional Defiant Disorder (ODD) * 82.4 81.6 82% Conduct Disorder (CD)* 58.8 69.4 64% *Note: Some disorders are graded on a continuum, therefore a child may meet criteria for both the less severe diagnosis (e.g. ODD), as well as meeting criteria for the more severe level of the disorder (e.g. CD).
7 We were also very interested to find that the prevalence of clinically significant levels of aggressive behaviour as rated by parents on the Child Behaviour Checklist, (CBCL: Aggression subscale) was significantly higher for females with neuropsychiatric disorders compared to males with the same diagnoses, on all diagnoses but Tic Disorders. Both males and females with tic disorders were rated as significantly aggressive by their parents/caregivers. The females meeting criteria for neuropsychiatric disorders were also rated as much more aggressive than their female counterparts who did not meet criteria for neuropsychiatric disorders. Summary To date we have collected, scored, entered and completed the preliminary analysis on a very exciting and novel data set. In our attempt to better understand who the children and adolescents are that are being admitted to the inpatient services at Youthdale Treatment Centres, the results emerging clearly suggest that there is a marked prevalence of neuropsychiatric disorders among both the males and females, with these children/adolescents comprising a population with much higher levels of aggressive behaviour than the other children/adolescents not meeting criteria for a neuropsychiatric disorder admitted to the same facility. Gaining clearer insight into the underlying neuropsychiatric diagnosis of this high risk population will provide the necessary data support to attract funding for a more comprehensive and long term study looking into the unique difficulties these children and adolescents bring to the inpatient units, and subsequently will give those providing care and interventions a better opportunity to be more effective and successful both in the long and short term in making an accurate diagnosis, in designing the appropriate and most effective treatment plan, and in collaborating with other professionals regarding the long term management of this very high risk population. Sincerely, Dr. Robyn J. Stephens, PhD. C.Psych. Neuropsychologist Director of Neurobehavioural Studies Youthdale Institute of Pediatric Neuroscience Assistant Professor University of Toronto, Faculty of Medicine, Dept of Psychiatry Affiliated Scientist, Toronto Western Research Institute, University Health Network Phone: (416) 368-4896 x2874 Fax: (416) 368-3192