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Rehabilitation Dataset Directory: Dataset Profile

Dataset: Survey of Pathways to Diagnosis and Services (Pathways)

Basic Information
Dataset Full Name Survey of Pathways to Diagnosis and Services
Dataset Acronym Pathways
Summary

The Survey of Pathways to Diagnosis and Services is a nationally representative survey about children with special health care needs aged 6 to 17 years old who were ever diagnosed with autism spectrum disorder, intellectual disability, or developmental delay. It was conducted in 2011 as a followup to the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN).


It was designed to increase the understanding regarding the processes by which these learning and developmental conditions are diagnosed and treated. The interview asked parents/guardians about the context of the diagnosis, symptom emergence, the child's current diagnosis status, educational services, and clinical treatments/interventions to address the developmental problems as well as their perspectives and concerns. A additional data collection effort, a Self Administered Questionnaire (SAQ) included a 49-item Children’s Social Behavior Questionnaire, designed to describe the severity and pattern of social deficits and other behaviors characteristic of children with ASD, especially in milder ASD cases.

Key Terms

Children, Autism, Special health care needs, Developmental conditions, Treatment, Educational services, IEP, Early intervention services, Unmet needs, Insurance adequacy,Children’s Social Behavior Questionnaire

Study Design Cross-Sectional
Data Type(s) Survey
Sponsoring Agency/Entity

National Institutes of Health (NIH):

National Institute of Mental Health (NIMH)

Health Conditions/Disability Measures
Health Condition(s)

Asperger’s Disorder, Autism spectrum disorders, ADD/ADHD, Anxiety disorders, Depression,  Pervasive Developmental Disorder

Disability Measures

Functional limitations (ADLs and/or IADLs), Developmental disabilities, Intellectual disability

Measures/Outcomes of Interest
Topics

Age at diagnosis, Diagnostician, Current diagnostic status, Emergence of symptoms,  Current symptomatology and impairment levels, Health care services, Educational services, Interventions, Therapy, Service providers, Medication types and use, Alternative health care, Wandering & wandering prevention, Parental perceptions, Bullying,Children’s skills and abilities, 

Sample
Sample Population

Parents/guardians of a sample of children identified as having (or having had) at least one of three developmental conditions (ASD, intellectual disability, and/or developmental delay). The sample was randomly selected from the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN).

Sample Size/Notes

4,032 children 

Unit of Observation

Individual

Continent(s) North America
Countries

United States

Geographic Coverage

National

Geographic specificity

U.S. Census Regions:

  • Northeast (CT, ME, MA, NH, RI, VT, NJ, NY, PA)
  • South (DE, MD, VA, WV, AL, FL, GA, KY, MS, NC, SC, TN, AR, LA, NM, TX, OK, AZ)
  • Midwest (IL, IN, MI, MN, OH, WI, IA, KS, MO, NE, ND, SD)
  • West (CO, MT, UT, WY, CA, HI, NV, AK, ID, OR, WA)
Special Population(s)

Children/Youth

Data Collection
Data Collection Mode

Telephone interview and self administered questionnaire

Years Collected

2011

Data Collection Frequency

One-time survey

Strengths and Limitations
Strengths

High response rate. Can be linked to NS-CSHCN data. The self administered questionnaire contains the 49-item Children’s Social Behavior Questionnaire (CSBQ, Hartman et al., 2006) that can be used to describe the severity and pattern of social deficits and other behaviors characteristic of children with ASD. It also contains the Strengths and Difficulties Questionnaire (SDQ, Goodman, 1997), which produces generalized scores for conduct problems, hyperactivity, emotional symptoms, peer problems, and pro-social behavior as well as questions related to chronicity, distress, social impairment, and burden to others.

Limitations

Some variables are suppressed to protect confidentiality in the public use dataset - see the available FAQ for a listing (note: these variables may be available in restricted data). Not all telephone interview respondents agreed to/completed the self administered survey (75% response rate). Parents/guardians in 514 (of the 4,032 respondents) reported in the Pathways survey that the children did not currently have any of the three conditions (ASD, intellectual disability, and/or developmental delay) reported in the 2009-10 National Survey of Children with Special Health Care Needs (NS-CSHCN).

Data Details
Primary Website

ChildHealthData site:

http://childhealthdata.org/learn/pathways

CDC site:

https://www.cdc.gov/nchs/slaits/spds.htm

Data Access

CDC (Pathways dataset):

https://www.cdc.gov/nchs/slaits/spds.htm

Data Resource Center (DRC) 

Enhanced Pathways dataset (merged with the 2009/10 NS-CSHCN interview file)

http://childhealthdata.org/learn/pathways/pathways-faq#Avail3

Data Access Requirements

Public Use Dataset

Restricted Dataset (includes some variables not available in the Public Use data) 

Summary Tables/reports

List of Variables and Frequency Counts:

ftp://ftp.cdc.gov/pub/Health_Statistics/NCHS/slaits/pathways/pathways_formatted_freqs.pdf 

Browse Pathways Data (interactive query):

http://childhealthdata.org/learn/pathways/data

Data Components
  • Pathways public use file (PUF)
    • Includes the Pathways phone interview and self-administered questionnaire
  • Pathways imputation file:
    • Contains imputed data for household income relative to the poverty threshold, adults in the household, highest education in the household, primary language spoken in the household, and the child’s race and ethnicity.
Similar/Related Dataset(s)

National Survey of Children with Special Health Care Needs (NS-CSHCN)

Selected papers
Other Papers

Diagnostic History and Treatment of School-aged Children with Autism Spectrum Disorder and Special Health Care Needs:

https://www.cdc.gov/nchs/products/databriefs/db97.htm

Service and treatment use among children diagnosed with autism spectrum disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4646056/

Parental Concerns, Provider Response, and Timeliness of Autism Spectrum Disorder Diagnosis

https://doi.org/10.1016/j.jpeds.2015.03.007

Prevalence and Correlates of Elopement in a Nationally Representative Sample of Children with Developmental Disabilities in the United States

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0148337

Technical

Frequently Asked Questions:

http://childhealthdata.org/learn/pathways/pathways-faq

https://www.cdc.gov/nchs/data/slaits/pathwaysfaq.pdf

 Resources for Pathways Data Analysis:

http://childhealthdata.org/learn/pathways/resources

Pathways Guide to Topics & Questions Asked:

http://childhealthdata.org/learn/pathways/topics_questions 

Syntax for scoring the Strengths and Difficulties Questionnaire (SDQ)  

http://www.sdqinfo.org/py/sdqinfo/c0.py


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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

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