This study is closed to enrollment.
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Better information is needed about the extent of mental health services needed by children and the use of services by these children. Reliable and valid information about children’s mental health service needs is essential for ensuring that those children most in need of care have access to it and that the best services are provided in a cost-effective way. This study assesses (a) service needs in the community in terms of psychiatric diagnosis, psychosocial impairment, risk factors, and family impact; (b) patterns of service use in and across the mental health, substance abuse, health, education, social welfare, and juvenile justice sectors; (c) service-users’ and non-users’ outcomes across a three-year period. The study focuses particularly on these issues for children in a rural area and for both African-American and white children.
The methodology and consent procedures are unchanged from those approved under Registry #000447-00-3R6. Children ages 9-16 were selected using a two-stage sampling design. 5,400 children were selected by equal probability random sampling using data provided by the school districts in the four participating counties (Vance, Granville, Franklin, and Warren).
The 5,400 children were randomly divided into 18 groups of 300 families each. Each month, a cohort of 300 families was screened via telephone. The screening instrument consists of 49 behavioral questions derived from the Child Behavior Checklist, a widely used parent report of children’s behavioral problems and competencies, with additional items referring to substance abuse. Cutoff scores are based on previous population-based studies.
Psychiatric disorders were assessed using the Child and Adolescent Psychiatric Assessment (CAPA) which permits DSM-IV diagnoses to be made together with measures of impairment, severity, and duration. The Child and Adolescent Services Assessment (CASA) complements the CAPA to provide a detailed record of all types of service use for mental health and substance abuse reasons. The Child and Adolescent Burden Assessment (CABA) is completed by parents/caretakers to assess the impact of a child’s psychiatric problems on the family. The assessment of physical maturation includes 2 finger pricks to obtain 5 drops of blood to measure hormones as well as measures of the child’s height and weight.
A second interview using same measures was conducted one year after the initial interview on a subsample of the wave 1 participants who were still under age 18 (N=410 families interviewed). At this interview we also measured blood pressure and heart rate using Dinamap and the Holter monitors. Separate consent forms for this aspect of the study are used with the child, while they are included in the overall parental consent form.
A third wave of interviews was conducted 18 months after the second with those families where children are still less than 18 years of age. The assessment protocol was the same as that used at the wave 2 interviews, with one variation: The psychiatric interview component was shortened to reduce the time imposition of the interview in the third wave. We assessed only depression, conduct problems, post-traumatic stress disorder, and substance use and abuse in this component. No changes in the protocol have been made since its IRB approval last year.
Parents were asked to give consent for information to be obtained from agencies and individuals who had provided services to the child. These data will be used to confirm and augment data from parents and children about service use.
Risk factor data included parental psychiatric problems and substance abuse, family structure, functioning, and pathology, and the index child’s physical health, maturation, academic ability and attainment. We will examine the effects of psychiatric disorders and service use on a variety of outcomes including school dropout, arrests and conviction, use of primary care services, pregnancy, accidents, deaths, and work record. Statistical methods for data analysis include exploratory data analysis, factor analysis for data reduction, a variety of linear models for testing hypotheses and longitudinal analyses.
The risks of the study are those associated with discussing personal issues with a trained interviewer: possible embarrassment and distress. Interviewers are trained to minimize these and procedures are in place for referring seriously distressed subjects to the mental health agencies with whose support the study is being conducted. Potential benefits include the ability to help in a study that will greatly increase public knowledge about the development of psychiatric disorders and the use of services among children and adolescents.
No reimbursement was offered for the screening stage, but reimbursement was offered for the main interview, because of the length of time involved and the importance of keeping families in the study. Each respondent was paid $20 on completion of each interview. Toll-free telephone lines are available for families to call in if necessary. There are no other expenses associated with the study.
Procedures to ensure accuracy and confidentiality are as follows:
- Interviewers were given extra training in the importance of confidentiality in psychiatric interviewing. They, like all study personnel, promised in writing to maintain that confidentiality.
- Protocols were checked by the interviewer before being sent to the coordinator for further checks for completeness and accuracy using a set of rules developed by Dr. Angold and Dr. Costello. These rules are currently being used in other studies within our office.
- When protocols were passed as correct, they were entered by the data clerk. The protocol was identified by number only: from this point they cannot be traced back to an individual except by the project coordinator.
- Data files underwent electronic checks for errors and inconsistencies before being entered into the master file. Computer files have no names or addresses in them, and individuals cannot be identifiable through them.
- Protocols and tapes are kept in a locked storage room or, in the case of tapes not used for training, erased.
- Written reports and papers do not identify subjects or make identification possible, without the written consent of the person concerned.