Rehabilitation Dataset Directory: Dataset Profile

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.

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

National Institutes of Health (NIH):

National Institute of Mental Health (NIMH)

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

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

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, 

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).

4,032 children 

Individual

United States

National

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)

Children/Youth

Telephone interview and self administered questionnaire

2011

One-time survey

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.

Some variables are suppressed to protect confidentiality in the public use dataset - see the available Pathways 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).

ChildHealthData site:

http://childhealthdata.org/learn/pathways

CDC site:

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

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

Public Use Dataset

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

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

• 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.
  

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

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

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

• National Children’s Study Archive
• National Institute of Child Health and Human Development Data and Specimen Hub