Youthdale Treatment Centres

Transcription

1 Youthdale Treatment Centres 227 Victoria Street, Toronto, ON M5B 1T8 PEG 205 Final Report August 1, 2007 Stephens R and Guerra R."Longitudinal functional and behavioural outcomes of youth with neuropsychiatric disorders (NPD) compared to those without NPD following discharge from an Ontario pediatric inpatient psychiatric facility (N=100). Name of Applicant: Dr Robyn Stephens PhD. C. Psych. 1. Executive Summary: After approval of grant funding from CHEO and Ethics Approval we initiated a longitudinal follow up study of 100 youth previously admitted to the Youthdale Treatment Centres Inpatient Units 12 months post discharge. Our goal for the follow up study was to utilize the opportunity to track the progress of the children and adolescents in an effort to scrutinize our current evaluation and treatment procedures and to develop the best evidence based practices for long term care. Results of our recently completed inpatient study which revealed 62% of the youth admitted to Youthdale met criteria for a defined Neuropsychiatric Disorder (Tourette s Syndrome, Attention Deficit Hyperactivity Disorder, Asperger s Syndrome). It became evident from our findings that we needed to improve our knowledge and understanding of which youth, both NPD and non NPD achieved a greater level of overall functioning and behavioural management after leaving our treatment facility, based on the standard treatment program, in order to better design and implement specific programming that would better meet the psychiatric needs of the different groups of children and adolescents. To conduct the follow up on the original 100 youth, we: 1- Conducted a standardized follow up CAFAS interview to compare levels of functioning across multiple domains 2- Sent out packages of parent/guardian respondent questionnaires, to parallel those completed upon discharge from Youthdale Treatment Centres, including: a. the Achenbach Child Behavior Checklist (CBCL) for longitudinal behavior comparisons (e.g. aggression, anxiety subscales) b. the Conner s Parent Rating Scale (CPRS) to compare attention and concentration over time c. the Behavioral Rating Inventory of Executive Function (BRIEF) to reassess current executive function levels, problem solving skills, inhibitory behavior, organization skills and self monitoring behavior d. the Children s Sleep Questionnaire to assess the youth s complaints of sleep disturbances 1

2 3- We attempted to obtain a new Global Assessment Functioning rating score to compare with admission, discharge, and follow up ratings After collection of the full data set, we conducted a statistical evaluation which provided us with objective information regarding the youth s progress, based on their current treatment programs, over an extended period of time. Our intention was to utilize these results to serve as a source document to help improve and maximize benefits to youths who were not progressing well post discharge from a pediatric mental health care facility, or youths at-risk. This project facilitates developing an outcomes management approach to inpatient psychiatry services at Youthdale, in addition to collecting critical clinical information of the individual patient and program levels. Based on this model of mental health care assessment for youth, the program and recommendations could be extended to pediatric hospitals and community health centres to ensure the delivery of the best fit inpatient psychiatric services for children and youth across Ontario. Youthdale has the unique opportunity through its well established and respected client based programming to take a lead in the development of a standardized NPD assessment initiative for the provincial network of inpatient psychiatry services. Summary of Main Findings: The parent/guardians/care givers we are contacting to obtain the follow up data for this high risk population of youth represent primarily secondary or substitute parent figures, with a high level of involvement of children s protective agencies and alternative or temporary housing arrangements. Although we have realized that despite a concerted effort the process of locating the primary guardians, making the initial contacts and obtaining comprehensive completion of the necessary questionnaires is very challenging task, we have continued to be creative and persistent and are achieving a high level of success toward establishing a valid and comparable data set. We are pleased to report that of the 100 subjects we collected data on in our initial inpatient study we successfully contacted 83 of the primary caregivers located across the province and received commitments from 80% (80) to participate in this follow up study. In the final analysis, 70 sets of the contacted parents/guardians willing to take part completed both pre and post discharge comprehensive CAFAS telephone interviews, resulting in an 87.5% follow-up data collection. The return of the completed questionnaires by prepaid envelopes was a notably slow, and selective process, and subsequently, although we made considerable efforts to call, remind and encourage (through a $20.00 form completion incentive) we received only 23 completed questionnaire packages from those who completed both CAFAS interviews (32.8%). From this low return of questionnaires we have learned that it is critical to include as much data collection material as possible during the time of the telephone contact as that is clearly an opportune and effective method of interacting with parents/guardians. We have also redesigned the future follow up studies to include a notice at the time of discharge that we will be contacting the families in the next few months. We plan on reducing the follow up times from those used in the current program evaluation (12-18 months) to an initial 3-month follow up, a 6 month follow up and a 12 month follow up post discharge from Youthdale Treatment Centres (YTC). The earlier follow up contact will enable us to maintain a stronger connection with the parents/guardians, to nurture a working relationship and will help to encourage the families to participate on a regular basis. 2

3 In terms of descriptive statistics, the final results represented a well balanced population of youth (47.1% male: 52.9% female) with 48.6 % having met criteria for a Neurodevelopmental Disorder (NPD) at the time of discharge from YTC, and 51.4 % who did not meet the criteria for a diagnosis of an NPD (nonpd). The participants in this study, randomly recruited based on consecutive admissions to the two inpatient units, included 32% (23 subjects) who were admitted to the Transitional Psychiatric Unit (TPU) and 67% (47 subjects) who were admitted to the Acute Service Unit (ASU) at YTC. Collectively, 30% (21 youth) came to Youthdale Treatment Centres from community referrals (Physicians, psychologists, psychiatrists) and 70% (49 youth) were referral through Children s Aid Societies). In our statistical review we controlled for age and gender as covariates, and conducted a repeated measure within subject statistical model. CAFAS Overall Total Functional Score Total Sample Completing both Assessments (N=70) Score Admission Follow up Time of CAFAS Interview NPD no NPD Total Sample In support of our preliminary results we are very pleased to discover that there was a significant improvement reported for both males and females toward markedly reduced CAFAS Total scores at the time of follow up relative to their scores achieved prior to or just at the time of discharge from the inpatient services (please refer to graph above). At the time of admission to YTC, the CAFAS Total scores for both groups reached the range indicating a more intensive level of care than outpatient was warranted, including the need for several sources of supportive care (NPD = (SD=40) and NonNPD =118.8 (SD=38.2)). Impressively, at the time of follow up, total 3

4 CAFAS scores for both groups had fallen significantly, and although scores fell within the range indicating the youth may need additional services beyond outpatient care (NPD=57.8 (SD=38), nonnpd =48.8 (SD=22.7), the decreases overall were significant at the level of p<.001. Select subscales of the Child Behavior Checklist T-Scores at Discharge (n=33) and Follow up (n=13) Males only Discharge Follow up Attention Rule Breaking Aggression Select subscales of the Child Behavior Checklist T-Scores at Discharge (n=36) and Follow up (n=10) Females only 4

5 Discharge Follow up Attention Rule Breaking Aggression It was equally interesting to discover that the Aggression Scores for Males and Females, while remaining constant for the males without a diagnosed NPD, reduced after discharge for the males without a NPD and for both groups (NPD and no NPD) of female participants. As a whole group, all subscales of the Child Behavior Checklist identified significant improvement as reported by parents/guardians across all subscales between the initial and follow up studies, with equal gains maintained when the group was divided by gender (See graphs above). Notably, at the time of follow up all subscales remained above average in reported problem levels, although not reaching the previous levels of clinical concern. In addition to overall functioning and aggression, the quality of sleep has improved across both genders regardless of the presence of an NPD. Only the males in the study have demonstrated minimal executive functioning gains (such as problem solving, organizational skills), compared to no notable improvements in frontal lobe functioning skills within the female population, regardless of a NPD diagnosis. Summary of implications of Findings: We have clearly observed that overall the functioning level of both male and female youth improves when comparing the time they are admitted to the pediatric mental health care facility, either in a time of crisis (ASU) or during transition (TPU), and months post discharge. What this suggests is that while all subjects reported a clinical and high risk need for intensive care upon admission, all youth received benefit from the unspecified level of programming, behaviour modification, individual medical and therapeutic treatments or family therapy that promoted an improvement in overall functioning over a long term follow up time period. While the limitations of the current pilot data set do not allow for specific program details, therapy intervention strategies etc., what is certain is that each youth, regardless of their neuropsychiatric diagnosis upon admission, or their age or gender, improved with treatment, and that these improvements in behaviour and functioning maintained long term. 5

6 The results obtained to date are revealing interesting differences in the functioning, sleep behaviours and ability to utilize executive functioning skills following a treatment program at YTC. While we will have to wait until a larger data set of follow up measures is acquired to make more specific statements about the impact of a NPD on the behaviours, functioning and overall well being of the youth discharged following inpatient psychiatric care, we are clearly observing differences in the gains made from the current programming on the longitudinal behavioural functioning of these high risk children and adolescents. We plan to modify our methodology to improve the number of data packages returned post discharge as mentioned earlier in this report, by a) notifying the parents/guardians at discharge that a follow up will be scheduled, b) to plan a short term follow up 3 months post discharge, c) to plan 6 and 12 month follow ups in an effort to maintain a dialogue with the parents/guardians and to help encourage long term involvement in the collection of data regarding the functioning and well being of these youth. We also plan to provide more education to the parents/guardians of children and youth at discharge regarding the importance of the information received as a basis toward molding and modifying the development and application of the current treatment programs offered to youth both during the time of their admission and post discharge at pediatric mental health care facilities. 2. Project Summary: 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. Severe aggression, often threatening the safety of self and others is the most common reason for referral for children and adolescents admitted to the 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. Gaining a better understanding of the spectrum of neuropsychiatric disorders that underlie severe behavioral disorders in children/adolescents is intended to help us provide the rationale for much needed future research, including comprehensive assessment strategies for successful treatments. Children with ADHD or disruptive behavior often do not receive the appropriate treatment for their neuropsychiatric disorder due to the paucity of physicians performing accurate differential diagnosis We were approved for grant funding from CHEO to enable us to build on this very exciting study by conducting a longitudinal follow up of the same 100 youth 6-12 months post discharge, in an effort to scrutinize our current evaluation and treatment procedures and to develop the best evidence based practice for long term care Our outcome questions generated as a result of this study include: 6

7 1) When a greater volume of follow up data is acquired as a result of modifications to the follow up strategies and methodology, will there emerge a difference in the level of overall functioning (CAFAS) after a time period of more than 12 months post discharge for the youth who were diagnosed at YTC with Neuropsychiatric disorders (NPD) versus those who did not meet criteria for a Neuropsychiatric disorder (nonnpd)? 2) Will the youth with NPD experienced significant improvement or deterioration in their overall functioning levels (in terms of CAFAS scores) at the time of follow up in contrast to their scores upon discharge, and compared to those without a NPD diagnosis? 3) What are the specific treatment strategies and intervention programs (post discharge)that yielded the greatest improvements in the youth s level of aggressive behavior, attention skills, or executive functioning skills, compared to their scores at the time of discharge? Do the two groups, NPD versus nonnpd differ in terms of progress/success? 4) Will there be improvement or change in the level of reported sleep disruption reported at the time of discharge, for both groups of youth, when reassessed at the times of follow up? We expected to find that youth coming into a pediatric inpatient psychiatric facility who met criteria for a NPD would be at a significantly higher risk than the general population for treatment failure post discharge. Within that group of youth, we speculated that at the time of discharge these same individuals would likely incur a considerably higher success rate with their post discharge programming based on an improved understanding of the child s biological nature, maladaptive behavior and subsequently, the treatments and programs available. What we found was that based on the instrument that was completed by 70% of the parents/guardians both at discharge and follow up, all youth improved in overall functioning, and across the individual subscales that comprised the CAFAS instrument. Evaluation Limitations: As described earlier in this status report, the parents/guardians/caregivers of the youth were attempted to be contacted on the average 7 times. A few weeks after the questionnaire packages were mailed, a phone call was made and a follow up letter was mailed to the families requesting them to complete and return the package. Although very few parents/guardians declined participation in the follow up study there has been a notable lack of commitment from the caregivers to complete the set of questionnaires sent to them, and to return the packages for analysis. The difficulty realized in this process could be in part be explained by the nature and structure of the families involved, which consist primarily of appointed guardians, temporary housing arrangements and complex behavioural and management issues with many of the youth. While it remains a challenging process to encourage the caregivers to take the time to complete the questionnaires, we plan to use this experience to modify our data collection times and strategies in the future follow up studies in an effort to collect data that will provide the basis for program strategies, changes and adjustments that will be most effective in improving the quality of life for youth who are admitted to mental health facilities. Conclusions and Recommendations: 7

8 Our goal with this study was to gain a better understanding of the spectrum of neuropsychiatric disorders that underlie severe behavioral disorders in children/adolescents who came into the care of a pediatric mental health care facility, in an effort to help to provide the basis for much needed future actions, including comprehensive strategies for successful long term care (after discharge). It remains critical that children s mental health concerns receive full evaluation followed by comprehensive assessment and treatment early in their development before marked behavioral problems become entrenched. We are greatly anticipating the increasing our preliminary data set and developing an extensive base of follow up outcome data to share with other pediatric mental health care facilities in an effort to assist and guide treatment and program planning. 8