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Frequently Asked Questions about Pathways


Below, you can find answers to frequently asked questions about the Survey of Pathways to Diagnosis and Services (Pathways). If you would like to access more general questions about the Data Resource Center, please see our DRC FAQ page.

To quickly orient yourself to Pathways content and design, see the DRC's Fast Facts about the Pathways survey.

Common Pathways questions

What is the Survey of Pathways to Diagnosis and Services (Pathways)?
Who sponsors Pathways?
When was Pathways data collected?
How do I receive assistance if I am having a hard time interpreting output from the NS-CSHCN? 

Availability of Pathways data

How can I get Pathways survey results?
Are the Pathways data files available to the public?
If I receive a dataset from the Data Resource Center (DRC), which dataset do I receive?
Can I get prevalence estimates?
Is state level data available in the Pathways survey?
Can I get data for subgroups of CSHCN with ASD, DD, and/or ID?

Pathways Methodology

Why are Pathways and NS-CSHCN sometimes called "SLAITS"?
Where can I find information about the sampling and administration methods used for the Pathways?
How are children selected for Pathways?
Can Pathways data files be merged with other data sets?

Pathways Topics

What topics are included in 2011 Pathways?
How many children with special health care needs in Pathways have Autism Spectrum Disorder?

Pathways measures on the DRC

How can I find out which Pathways questions were used to develop a specific child health indicator on the DRC?
Who are the denominator of the DRC data query?
How are Census Regions defined?
Is it possible to get a Pathways data set to do my own analysis?
How are Pathways unknown or missing values handled in the DRC interactive data query results?
Is it possible to look at two subgroups from the Pathways at the same time?
Is there a standard format for citing Pathways information from the DRC website in an academic paper?

Common Pathways questions

What is the Survey of Pathways to Diagnosis and Services (Pathways)?

The Survey of Pathways to Diagnosis and Services (Pathways) is a nationally representative survey of children with special health care needs age 6 to 17 years who were ever diagnosed with autism spectrum disorder (ASD), intellectual disability (ID), or developmental delay (DD). Pathways is a follow-up survey to the 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN), parents and guardians were asked about the emergence of symptoms, the context of the original diagnoses, the providers who made the diagnoses, the child’s current diagnostic status, the types of clinical treatments/interventions and educational services used to address the developmental problems, and other parental concerns or perspectives.

Parents and guardians of CSHCN age 6- 17 years ever diagnosed with ASD, ID, or DD as identified in the 2009/10 NS-CSHCN were invited to participate in an additional phone survey and self-administered mail-in questionnaire.  Pathways selected and attempted to re-contact 6,090 parents or guardians of the 7,572 eligible cases from the 2009-2010 NS-CSHCN. Of the 4,032 parents and guardians who completed the phone interview, 3,997 agreed to complete the self-administered mail-in questionnaire (SAQ). A total of 2,988 SAQs were completed.

More information about Pathways can be obtained from the National Center for Health Statistics website.

Who sponsors Pathways?

The Pathways survey is sponsored by the Maternal and Child Health Bureau as part of their work on the NS-CSHCN. The Pathways survey itself was sponsored by the National Institute of Mental Health (NIMH) of the National Institutes of Health (NIH), with funds available from the American Recovery and Reinvestment Act of 2009 (ARRA) (Public Law 111-5). The National Center for Health Statistics (NCHS) State and Local Area Integrated Telephone Survey (SLAITS) program of the Centers for Disease Control and Prevention (CDC) oversaw the sampling, survey implementation, and data management for Pathways. 

Autism Speaks has provided funding to ensure the DRC includes data from the Pathways survey as well as to promote the use of data on children with autism included in other datasets included in the DRC website.

When was Pathways data collected?

The first Survey of Pathways to Diagnosis and Services  to-date was conducted between February 2011 and June 2011 as a follow up to the 2009/10 National Survey of Children with Special Health Care Needs.

How do I receive assistance if I am having a hard time interpreting output from Pathways?

The DRC makes it easy to receive technical assistance for questions related to understanding data and using our website. Just ask us a question. The DRC Staff makes every effort to respond to your email within 2 to 3 business days.

Availability of Pathways data

How can I get Pathways survey results?

The Data Resource Center website lets you interactively browse Pathways data, and provides point-and click access to Pathways survey results in tabular and graphical formats. Pathways data sets and resources to analyze the data are also available.  

Are the Pathways data files available to the public?

Yes. Free, easy to use, fully cleaned and labeled data sets are available from the Data Resource Center. All Pathways questions and data shown on the DRC website, including demographic and constructed health indicators, are available in SAS and SPSS formats by clicking on the Request a Dataset link.

Data files for Pathways can be downloaded in SAS file format at no cost from the National Center for Health Statistics website. The NCHS released two datasets: 1) The Pathways public use file (PUF), which includes the Pathways phone interview and self-administered questionnaire, and 2) the Pathways imputation file, which 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.

Individuals can apply to use the restricted dataset through NCHS’s Research Data Center.

If I receive a dataset from the Data Resource Center (DRC), which dataset do I receive?

The DRC provides an enhanced Pathways dataset that has been merged with the 2009/10 NS-CSHCN interview file.  This dataset, which includes the core outcome and indicator variables, can also be requested at no charge in SAS/SPSS formats. This dataset includes one imputation file, which contains imputed data for household income relative to the poverty threshold, household size, highest education in the household, primary language spoken in the household, and the child’s race and ethnicity.  To access all five imputation files, please visit the NCHS site.

The Pathways and NS-CSHCN linked dataset created by the DRC uses the Pathways weights.  Therefore, the resulting estimates are also representative of CSHCN age 6-17 years (at time of Pathways Phone Interview) who were ever diagnosed with ASD, intellectual disability and/or developmental delay. 

Further information on the Pathways dataset can be found in the DRC’s codebook. 

Important Note: The dataset received from the DRC has a denominator of CSHCN who were ever diagnosed with ASD, developmental delay and/or intellectual disability, with weights to represent the non-institutionalized population of CSHCN, EVER diagnosed with ASD, DD, and/or ID nationally. However, all statistics provided by the DRC online queries are AMONG CSHCN who CURRENTLY have ASD, DD and/or ID.

Can I get prevalence estimates?

No, the data from Pathways are among CSHCN who have ASD, DD, and/or ID. Data from the National Survey of Children’s Health is the best source to get prevalence estimates for these conditions.

Is state-level data available in Pathways?

State identifier information is not publicly available due to the limited sample size.  However, the dataset can be stratified by Census region. Restricted geographical information can be obtained through the National Center for Health Statistics (NCHS) Research Data Centers (RDC).  

Can I get data for subgroups of CSHCN with ASD, DD, and/or ID?

All data results available are also available by numerous subgroups of children, including their age, gender, race/ethnicity, household income, health insurance status, and a variety of other important demographic and health status characteristics.

Pathways Methodology

Why are Pathways and NS-CSHCN sometimes called "SLAITS"?

The sampling and data collection for the National Survey of CSHCN is conducted using the SLAITS mechanism. SLAITS is an acronym for the “State and Local Area Integrated Telephone Survey,” an approach developed by the National Center for Health Statistics to quickly and consistently collect information on a variety of health topics at the state and local levels.

Where can I find information about the sampling and administration methods used for Pathways?

What questions are in the surveys? Can I see the final questionnaire that was used? Who is in the survey, how are they chosen? Are the results representative of US children? Answers to these questions can be found in the Survey Methodology section of our website.

How are children selected for Pathways?

Parents or guardians of children aged 6-16 years who completed the 2009/10 NS-CSHCN and reported that they had once been told by a doctor or other health care provider that the child had ASD, DD, or ID were re-contacted for a telephone interview.  If contact was re-initiated the interview was administered only if (1) the respondent was the same person who completed NS-CSHCN interview, (2) the child was age 6 to 17 years at the time of the Pathways interview, (3) the child still lives in the same household, and (4) the respondent confirmed their response from the NS-CSHCN interview that the child had ever been diagnosed with ASD, ID, DD. 

Can Pathways data files be merged with other data sets?

The Pathways and the NS-CSHCN public use microdata file provided by NCHS can be merged together using the following states:

  1. First sort the NS-CSHCN Household and Screener File using by the household identification number (IDNUMR) then merge by IDNUMR
  2. Sort merged NS-CSHCN file and the NS-CSHCN Interview file using the child identification number (IDNUMXR), then merge by IDNUMXR.
  3. Sort the merged NS-CSHCN file and the Pathways file by IDNUMXR then merge both files by IDNUMXR.

Note: additional steps are required if merging with the imputation files.

Source:  http://www.cdc.gov/nchs/data/slaits/PathwaysFAQ.pdf

The Pathways dataset created for data users by the DRC links two public use files from the NCHS: the Pathways phone interview and self-administered questionnaire file, and the 2009/10 NS-CSHCN interview file. 

Pathways Topics

What topics are included in 2011 Pathways?

Parents and guardians of children with special health care needs (age 6 to 17 years) ever diagnosed with autism spectrum disorder, intellectual disability, or developmental delay were asked about the emergence of symptoms, the context of the original diagnoses, the providers who made the diagnoses, the child’s current diagnostic status, the types of clinical treatments/interventions and educational services used to address the developmental problems, and other parental concerns or perspectives.

The self-administered questionnaire (SAQ), the mail-in component of Pathways, 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. It also includes questions related to chronicity, distress, social impairment, and burden to others. Further information including syntax for scoring the SDQ can be found here: http://www.sdqinfo.org/py/sdqinfo/c0.py. The SAQ also contain the Children’s Social Behavior Questionnaire (CSBQ, Hartman et al., 2006). This 49-item questionnaire, adapted (with permission of the author) for use with English-speaking US parents, can be used to describe the severity and pattern of social deficits and other behaviors characteristic of children with ASD, especially in milder ASD cases.

When linked to the NS-CSHCN data, an even more comprehensive picture of the health and well-being, health care use, quality and experiences of CSHCN who have been identified as having ASD, DD and/or ID, and their families.

For a full look at all of the questions in the surveys, please see the Guide to Topics and Questions 

How many children with special health care needs in Pathways have Autism Spectrum Disorder?

Current CSHCN Developmental Conditions

Count

ASD only

496

Intellectual disability only

46

Developmental delay only

1,441

ASD and intellectual disability

11

ASD and developmental delay

621

Intellectual disability and developmental delay

611

All three of the above conditions

292

None of the above*

514

Total

4032

* Children in this category are CSHCN who are eligible for the Pathways survey because a doctor or other health care provider had said that the child had one or more of the three conditions, but the parent or guardians reported in the Pathways survey that the children did not currently have any of the three conditions.

Source: http://www.cdc.gov/nchs/data/slaits/PathwaysFAQ.pdf

 

Pathways measures on the DRC

How can I find out which Pathways questions were used to develop a specific child health indicator on the DRC?

Please see our overall FAQs page.

Who are the denominator of the DRC data query?

The DRC dataset has a denominator of CSHCN who were ever diagnosed with ASD, developmental delay and/or intellectual disability, with weights to represent the non-institutionalized population of CSHCN, ages 6-17 years old, ever diagnosed with ASD, DD, and/or ID nationally. However, all statistics provided by the DRC online queries are AMONG CSHCN who CURRENTLY have ASD, DD and/or ID. 

How are Census Regions defined?

The “Census Region” refers to four standard federal regions used for the presentation of Census data that include all 50 States and the District of Columbia as follows:

  • 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

Is it possible to get a Pathways data set to do my own analysis?

Yes. We do offer the Pathways dataset merged to the 2009/10 NS-CSHCN in both SPSS and SAS formats with all the publicly released variables, plus all the indicator variables on our website. Also included in the dataset are relevant socio-demographic and health stratifiers. The first step is to Request a Dataset so we can send you relevant Data Request and Data Use Agreement forms.

Keep in mind that due to sample size, the response for some specific demographic variables or specific questions might not be reliable because of an inflated standard error value.

How are Pathways unknown or missing values handled in the DRC interactive data query results?

Please see our overall FAQs page.

Is it possible to look at two subgroups from the Pathways at the same time?

Please see our overall FAQs page.

Is there a standard format for citing Pathways information from the DRC website in an academic paper?

Please see our overall FAQs page