Survey of Pathways to Diagnosis and Services

Transcription

1 Survey of Pathways to Diagnosis and Services Stephen J. Blumberg, Ph.D. Centers for Disease Control and Prevention National Center for Health Statistics AMCHP Annual Conference February 14, 2012 Washington, DC Autism A group of neurodevelopmental disorders Impairments in social interactions Impairments in communication Repetitive, stereotyped patterns of behavior Comprised of three named disorders Autistic disorder Asperger disorder Pervasive developmental delay not otherwise specified Prevalence of Autism Spectrum Disorder 1.1% of children 3-17 years of age Based on data from the 2007 National Survey of Children s Health Random-digit-dial di it di (RDD) telephone survey of parents 91,642 households with children (0-17 years) participated One child randomly selected from each household Survey focused on the health and well-being of children, their families, and their communities Consistent with records-based estimates from CDC s Autism and Developmental Delay Monitoring Network 1

2 Prevalence of Autism Spectrum Disorder Does your child currently have autism Prevalence of Autism Spectrum Disorder Does your child currently have autism 1.10% Prevalence of Autism Spectrum Disorder Does your child currently have autism 1.78% 1.10% 2

3 Prevalence of Autism Spectrum Disorder 1.78% Does your child currently have autism 1.10% 38.2% of children ever diagnosed are reported to not currently have autism/asd Possible Explanations Some children diagnosed at young ages may no longer meet diagnostic criteria at later ages. Some children might have been suspected of having an ASD based on screening, but the condition was later ruled out and never truly diagnosed. Some children with other developmental conditions might have been intentionally misclassified as having an ASD to facilitate receipt of needed services. Some parents might erroneously say their child doesn t have the condition because the child no longer receives special education or other autism-specific services for the condition. Survey of Pathways to Diagnosis and Services, 2011 Sponsor: National Institute of Mental Health, with American Recovery and Reinvestment Act funds 3

4 Survey of Pathways to Diagnosis and Services, 2011 Sponsor: National Institute of Mental Health, with American Recovery and Reinvestment Act funds Source of Sample: Follow-up survey about children with special health care needs (CSHCN) who were first identified in the National Survey of CSHCN, a nationallyrepresentative RDD survey Eligibility: CSHCN aged 6-17 years identified as having ever been diagnosed with autism/asd, intellectual disability, and/or developmental delay Respondent: Parent or guardian knowledgeable about the health of the child Telephone Interview Completion Rate: About 70% Sample Size: 4,057 completed telephone interviews Approximate Sample Sizes 400 with ASD diagnosis (not current) 1,400 with current ASD 1,000 with current intellectual disability 3,000 with current developmental delay (children may be reported to have 2 or 3 conditions) Key Research Questions What are the diagnostic pathways and services used by school-aged CSHCN diagnosed with one of the three developmental conditions (whether or not they have the condition currently)? Relationship to parental perceptions, family history, or demographic characteristics Differences between those who do not currently have the condition (based on parent report) and those who do Similarities among and differences between the specific conditions 4

5 Key Content Areas: Concerns and Diagnostic Experiences Context of original diagnosis Presenting symptoms or concerns Who first raised the concerns How did the doctor respond to the concerns How did the school respond to the concerns History of comorbid disorders or other diagnoses Age when first diagnosed Type of health care provider who made first diagnosis Whether any health professionals ever changed the diagnosis or said child shouldn t have one Key Content Areas: History of Clinical Service Use Delay between noticing the problem and receiving services Types of services used and treatments received Therapies Social skills training Types of providers child worked with Medication types Age when first started using each service Current services used, how often, and length of sessions Key Content Areas: Educational Services Educational services currently used Academic support and tutoring Aides, shadows, and resource rooms Receipt of Early Intervention Services 5

6 Key Content Areas: Parent Perceptions Unmet needs and insurance adequacy Functional limitations (activities of daily living) Service effectiveness and satisfaction with services Permanency, causes, and prognosis of the disorder Key Content Areas: Wandering and Prevention Places that child has wandered off from Use of barriers, alarms, or tracking devices Pathways Survey, Part 2: The Mailed Questionnaire For current symptomotology and impairment levels The Strengths and Difficulties Questionnaire Developed by Dr. Robert Goodman (King s College, London) 25 items to assess five emotional and behavioral domains Screens for serious emotional disturbance The Children s Social Behavior Questionnaire Developed by Department of Psychiatry, University of Groningen 49 items to allow for a differentiated description of PDD problems Assesses extent to which social problems are present, even when problems suggest a diagnosis outside the PDD spectrum 2,998 mailed questionnaires returned (74%) Schedule Pretest: February 2011 Data collection began: February 2011 Telephone survey ended: May 2011 Mail questionnaire ended: June 2011 Public use data files: TBD 6