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> Old (Pre-July 2018) > Review the Surveys > Survey of Pathways to Diagnosis and Services > Pathways FAQs

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.

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:

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

October 2017 CAHMI Newsletter: 2016 NSCH data now available on the interactive data query!

October 31, 2017

October 2017 CAHMI newsletter. In this newsletter, we announced the availability of new data from the 2016 National Survey of Children's Health on the DRC's interactive data query, along with supporting documents. We also shared the CAHMI's recent info briefs and fact sheet on ACEs and thriving, using data from the 2016 NSCH, as well as updates on the MCH-MRN.

Data from the 2016 National Survey of Children's Health (NSCH), funded and directed by the Health Resources and Services Administration, Maternal and Child Health Bureau (HRSA/MCHB) are now available on the Data Resource Center website! National, state and child subgroup findings on key measures from the 2016 survey are now available on the DRC’s NSCH interactive data query. All Title V National Performance Measure (NPM) and National Outcome Measure (NOM) findings are available as well as findings on topics representing the range of those addressed in the 2016 NSCH: children’s physical and mental health status (including health conditions and functional difficulties); health insurance, health care access, use, and quality (e.g. medical home; transition to adult health care); family health and activities; neighborhood characteristics; and age-specific content on school and learning. Data are available at the national level for a range of child subgroups.Where sample sizes are sufficient, data are also available at the state level for child subgroups within each state. Title V measures can also be viewed across all states in our NPM and NOM hot-spotting tables. Downloadable datasets and accompanying codebooks will be available at a later date; for questions on this, please contact us at info@cahmi.org.

As you may know, there were several key changes in the administration of the 2016 NSCH. Most importantly, the 2016 NSCH represents an integration of past years of the NSCH and National Survey of Children with Special Health Care Needs. The new NSCH was also designed to be fielded annually from 2016 onward, but with smaller samples sizes each year than in prior years of the survey. Additionally, the 2016 NSCH was administered via web- and mail-based (paper) instruments, as opposed to via telephone. To assist in your use of the data, the Data Resource Center provides several “learn about the survey” documents, including:

To learn more, look for the Maternal and Child Health Bureau’s DataSpeak webinar on the 2016 NSCH, which was held October 30, 2017. Presentations were made by:

Reem Ghandour, DrPH, MPA,Director of the Division of Epidemiology in the MCHB’s Office of Epidemiology and Research, on the NSCH redesign and new estimates from the 2016 NSCH.
Jason Fields, PhD, MPH,Survey Director at the US Census Bureau, on the data collection methodology for the latest iteration of the survey.
Christina Bethell, PhD, MBA, MPH, Professor at the Johns Hopkins Bloomberg School of Public Health and Director of the CAHMI and Data Resource Center, on how participants can jump start their use of the new NSCH data using the DRC website’s interactive data query tool.

Check the DataSpeak archive for a transcript and slides from the webinar.

We are also pleased to announce the creation of a new Title V Portal on the Data Resource Center website. This portal was created in partnership with Title V leaders to address their new and evolving needs, providing fast access to Title V measure data at both the state and national levels and extensive resources to support Title V state action plans. The portal includes easy access to all Title V NPMs and NOMs via an interactive data table, as well as US maps and hot-spotting tables, which allow users to compare their state’s performance to other states and/or the nation. We have also gathered resources to support needs assessments, development of State Performance Measures, understanding and choosing strategies to impact NPMs and NOMs, and more. Check it out and let us know what you think and how we can best meet your needs!

Adverse Childhood Experiences (ACEs) & Possibilities to Heal and Thrive

In collaboration with the Robert Wood Johnson Foundation (RWJF), the Children’s Hospital Association, and AcademyHealth, the CAHMI has also put together a fact sheet and issue brief on Adverse Childhood Experiences (ACEs) and positive health which incorporate data from the 2016 NSCH.

Also available is an overview of the National Agenda to Address ACEs, recently published in Academic Pediatrics (see below for more details). These briefs were developed in conjunction with RWJF's launch of the Sesame Workshop’s “Sesame Street in Communities” initiative on helping children cope with traumatic experiences, and are part of a series of briefs that will explore ACEs along with factors that can mitigate the effects of trauma and toxic stress, including family relationships & resilience, social & emotional skills, and family-centered care.

To learn more about ACEs and toxic stress, and how to identify and discuss them with families, please join a Nov. 15th webinar, sponsored by the American Academy of Pediatrics' National Advisory Board, with Nadine Burke Harris of the Center for Youth Wellness and the CAHMI’s Director, Christina Bethell!

We're coming to Atlanta for the APHA 2017 Annual Meeting and Expo -- Booth #603!

Are you interested in the NSCH and want to know how we could benefit your research, advocacy, and systems improvement work? Come meet us at the American Public Health Association’s Annual Meeting and Expo, happening November 4-8 at The Georgia World Conference Center in Atlanta, Georgia! Meet our team and ask questions about our NSCH interactive data query and other resources on our website. In addition, get more information about the 2016 National Survey of Children’s Health data (see above) and learn how you can get involved with other CAHMI projects. Our schedule of presentations and posters can be found below:

Sunday, November 5^th, 4:30-5:30 pm: Changing the Climate for Family Engagement: A New Tool to Improve Family Partnerships and Quality of Routine Care for Children with Special Health Care Needs (poster)
Monday, November 6^th,8:30-10:00 am: Building the field to address adverse childhood experiences and promote wellbeing in pediatrics (presentation)
Tuesday, November 7^th, 8:30-10:00 am: Effects of positive experiences on child health and flourishing in the face of adversity: Results from the National Survey of Children's Health (presentation)
Tuesday, November 7^th, 2:30-4:00 pm: Quality Improvement in Ambulatory Pediatric Care: Implementing Parent-Centered Online Tools to Improve Quality and Outcomes of Well Child Care (presentation)

Again, we will be exhibiting at booth #603– come say hello, ask questions, and get resources!

Maternal and Child Health Measurement Research Network (MCH-MRN) Meeting

The Maternal and Child Health Measurement Research Network (MCH-MRN), led by the CAHMI and funded by HRSA/MCHB, focuses on improving child and family health measurement through innovation and shared accountability.

On August 13th-14th, 2017, the MCH-MRN's Year 1 Advisory Committee and Partners Meeting took place at the AcademyHealth offices in Washington, DC. Coordinated by the CAHMI, the meeting was attended by an interdisciplinary group of MCH stakeholders from around the country, including MCH program, policy, and advocacy leaders, funders, and thought-leaders.

The meeting sought to determine next steps for several of the MRN’s MCH measurement resources, move forward the MRN’s Technical Working Groups, discuss how to further operationalize the MRN’s Strategic Agenda, and brainstorm dissemination opportunities. If you’re interested in joining the network or just learning more, please contact the CAHMI at info@cahmi.org.

CAHMI in the News

In addition to the ACEs briefs mentioned above, the CAHMI, along with AcademyHealth and RWJF, led the development of an open source special issue of Academic Pediatrics, which includes 28 research papers and commentaries addressing the need and possibility to prevent, mitigate and heal the impact of ACEs, promote protective factors and policies and advance child and family well-being in the U.S. CAHMI staff also authored papers for the special issue on a national agenda to address ACEs and an assessment of the state of tools used to evaluate ACEs.

As part of their State of Obesity project, the Robert Wood Johnson Foundation profiled 2016 NSCH national and state data on youth who are overweight & obese.This took place in conjunction and partnership with the CAHMI's release of this data on the DRC website in early September as part of the Title V measures release with MCHB. Data show that roughly 3 out of 10 children age 10-17 are overweight or obese, with seven states having rates exceeding 35%. These data received coverage both nationally and in local newspapers from over 15 states.

News from Our Partners

The Association of Maternal & Child Health Programs (AMCHP)

is proud to announce the release of the Title V Data Integration toolkit, a collection of resources that aims to assist states as they integrate Title V data into Early Childhood Integrated Data Systems. The toolkit consists of three types of resources: Title V Data Integration Tip Sheets, Title V Data Integration Use Cases, and State Examples.Learn more. AMCHP also recently created an issue brief in partnership with the National Institute for Children’s Health Quality called “Early Childhood Developmental Screening and Title V: Building Better Systems.”

Additionally, AMCHP just released a new interactive website for the National Standards for the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, Version 2.0. This tool strives to serve the nation’s 14.2 million children and youth with special health care needs. Version 2.0 of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs sets the core components for the structure and process of effective systems of care while streamlining content for easier use by states and stakeholders. Visit the website here.

If you're heading to APHA,

check out the full day pre-conference Learning Institute course on “How to Evaluate Public Health Programs.” The purpose of this workshop is to equip public health professionals, particularly those working at the local and/or community level, with the essential knowledge and skills needed to evaluate public health programs. View the Learning Institute Course descriptions to learn more, and then register to participate.