Frequently Asked Questions
Below are frequently asked questions (FAQs) about the Data Resource Center (DRC) in general, or that pertain to all surveys available on this website. For survey-specific FAQs, please click on one of the following links.
For questions about the Pathways survey (follow-up to NS-CSHCN), click here to view the Pathways survey FAQ page.
For questions about the NHIS, click here to view the NHIS FAQ page.
For questions about the NHIS CAM Supplement, click here to view the NHIS CAM Supplement FAQ page.
For questions about the NSCH, click here to view the NSCH FAQ page.
For questions about the NS-CSHCN, click here to view the NS-CSHCN FAQ page.
About the DRC
What is the Data Resource Center (DRC)?
Who sponsors the DRC?
Definitions and Measure Development
How can I find out which questions were used to develop a specific child health indicator?
Why aren’t there any data on this website for Asian, American Indian, Alaska Native, or Native Hawaiian/Pacific Islander children?
How are the race/ethnicity categories created which appear in the data query search feature on this website?
What is a "medical home"?
How are unknown or missing values handled in the DRC interactive data query results?
Why are there sometimes different estimates of CSHCN in different surveys?
What is the Children with Special Health Care Needs (CSHCN) Screener?
What does it mean that the data from these surveys are “parent-reported”? Is parent-reported data valid?
Using the DRC and the Surveys
Is it possible to get a list of publications that have used the NSCH or the NS-CSHCN?
Is there a standard format for citing information from the DRC website in an academic paper?
How do I receive assistance if I am having a hard time interpreting output from the NSCH or NS-CSHCN?
Is it possible to look at two subgroups of children at the same time?
What internet browsers are supported by the DRC website?
How can I link to your site?
When will the next iterations of the NSCH and NS-CSHCN come out?
DRC Indicator Datasets
What is included in the NSCH Indicator data sets?
What is included in the NS-CSHCN Indicator data sets?
What is included in the NHIS Child CAM data sets?
Do the data sets include local-level data?
How do I cite an Indicator data set from the Data Resource Center?
How are DRC Indicator data sets different from National Center for Health Statistics data files?
Where can I find out how derived variables in DRC data sets were conceptualized and constructed in SAS or SPSS?
Is there a charge for data sets provided by the DRC?
What can I expect when I request a DRC Indicator dataset?
What if I have additional questions?
About the DRC
The purpose of the Data Resource Center for Child and Adolescent Health (DRC) is to advance the effective use of public data on the health and health-related services for children, youth, and families in the United States. The DRC does this by providing hands-on access to national, state, and regional data findings as well as offering technical assistance on the interpretation and use of these data by policymakers, program leaders, advocates and researchers in order to inform and advance key child and youth health goals. To learn more visit our About the DRC page.
The Data Resource Center for Child and Adolescent Health is a project of the Child and Adolescent Health Measurement Initiative (CAHMI) supported by Cooperative Agreement U59MC27866 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB).
In addition to our partnership with the Maternal and Child Health Bureau, the DRC partners with the National Center for Health Statistics (NCHS) at the Centers for Disease Control and Prevention to provide this data. NCHS collects the data for both the National Survey of Children’s Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN). Measures which derive from the surveys are developed collaboratively through a partnership between the Maternal and Child Health Bureau, the National Center for Health Statistics and a Technical Expert Panel, in which the Data Resource Center is a member and an Advisory Committee of each project includes experts in the field
We have a longstanding collaborative relationship with Family Voices, an organization that promotes a strong role for families of children with special health care needs. Through this collaboration, CAHMI and the DRC work to promote data partnerships with family advocates and community leaders. The data on the DRC come from families, and with Family Voices we work to ensure that the data can be used by families in order to promote quality of care for CSHCN.
The DRC also works in partnership with other organizations on special projects, including Autism Speaks, the National Center for Complementary and Integrative Health, the American Academy of Pediatrics, and the Lucile Packard Foundation for Children’s Health.
Definitions and Measure Development
Every child health indicator in the DRC data query has a pop-up box that displays pertinent information about the variable, including a list of the survey questions used to construct it. The pop-up box for a specific indicator or question can be viewed by clicking on the information icon next to questions and indicators on the browsing and results pages. This information is also available in the survey’s codebook, found on each survey’s “Resources for Data Analysis” page.
At the national level, children in these race categories are combined into a single group called OTHER. This is done because only a handful of States meet the National Center for Health Statistics’ confidentiality standards for releasing data to the public. The National Center for Health Statistics only includes individual level data for one of these groups in the publicly available data files when a group comprises 5% or more of the total child population in any given state. This standard is in place to protect against the chance of an individual child inadvertently being identified in states with relatively few children from these groups in their populations.
- For the NSCH and the NS-CSHCN, seven states have data in the publicly released data files for the race categories of American Indian or Native Alaskan (AK, AZ, NM, MT, ND, OK, SD). Only Hawaii has data released for the category Native Hawaiian/Pacific Islander. In the 2003 NSCH, and both NS-CSHCN datasets Asian-specific race data is publicly available for five states (CA, NJ, NY, WA, HI). Asian-specific data are available for nine states (CA, MD, MA, NV, NJ, NY, VA, WA, HI) in the 2007 NSCH and for ten states in the 2001/12 NSCH (CA, MD, MA, MN, NV, NJ, NY, VA, WA, HI). Asian-subgroup data are now available at the national level for the NSCH and NS-CSHCN on the data query as well.
- It is important to note that when individual-level data for one or more of these race categories is not available in the publicly released survey data files for a specific state, it does not mean that the data were not collected. Rather, it indicates that one or more of these specific groups make up less than 5% of the total child population in that state. Researchers interested in analyzing the non-publicly released data for these minority groups in a state can submit a proposal to the Research Data Center (RDC) at the National Center for Health Statistics. The RDC provides access to detailed data files in a secure environment that does not jeopardize the confidentiality of respondents. For information about the RDC, click here.
Additional information about how data about children’s race/ethnicity were collected and processed for the NSCH and the NS-CSHCN is available in the Survey Design and Operation Manuals.
The child race/ethnicity groups available on this website are standard categories constructed according to the same guidelines used by the National Center for Health Statistics.
Both the NSCH and the NS-CSHCN ask a series of questions about the sample child’s race and Hispanic or Latino ethnicity. Respondents are allowed to answer affirmatively to one or more categories of race. There are a number of ways that the responses to these questions can be used to create different groupings of race and/or ethnicity. The DRC website provides two race and/or ethnicity groupings for NSCH and NS-CSHCN. In the 2003 & 2007 NSCH and 2001 and 2005/06 NS_CSHCN, children were assigned to one of five distinct categories according to the following criteria:
- HISPANIC: Children identified as having Hispanic or Latino ethnicity, regardless of reported race.
- WHITE: Non-Hispanic children with White as the only reported race category.
- BLACK: Non-Hispanic children with Black as the only reported race category.
- MULTI-RACIAL: Non-Hispanic children with two or more race categories reported.
- OTHER: Non-Hispanic children identified by a single one of the following categories: Asian, American Indian, Alaska Native, or Native Hawaiian/Pacific Islander. See previous question for more information.
In the 2009/10 NS-CSHCN, 2011/12 NSCH, and other surveys, the later 2 categories are combined as “Other, non-Hispanic” category. The DRC added the race/ethnicity grouping including “Asian, non-Hispanic” category in the 2007 NSCH, 2011/12 NSCH and 2009/10 NS-CSHCN through a contract with the National center for Health Statistics. However, Asian subgroup data is only available at the national level due to sample size restrictions. Additional information about how data about children’s race/ethnicity were collected and processed for the NSCH and the NS-CSHCN is available in the Survey Design and Operation Manuals.
“Medical home” refers to medical care for infants, children, and adolescents that is accessible, continuous, comprehensive, family-centered, coordinated, compassionate, and culturally effective. The medical home concept was first proposed by the American Academy of Pediatrics (AAP) in a 1992 policy statement which was updated in 2002. The AAP definition of medical home emphasizes that a medical home is "not a building, house, or hospital, but rather an approach to providing continuous and comprehensive primary pediatric care from infancy through young adulthood, with availability 24 hours a day, 7 days a week, from a pediatrician or physician whom families trust."
The need for an ongoing source of health care—ideally a medical home—for all children has been identified as a priority for child health policy reform at the national and local level. The US Department of Health and Human Services' Healthy People 2010 and 2020 goals and objectives state that "all children with special health care needs will receive regular ongoing comprehensive care within a medical home" and multiple federal programs require that all children have access to an ongoing source of health care. The following links provide more information and background on the medical home concept:
American Academy of Pediatrics 2002 Medial Home Policy Statement
American Academy of Pediatrics National Center of Medical Home Initiatives
Joint Principals of the Patient-Centered Medical Home
Whether children do or do not experience receiving care within a medical home is measured in both the NSCH, NHIS-Child and the NS-CSHCN and the measure has been endorsed by the National Quality Forum. The DRC has produced a detailed manual outlining the concept and measurement of medical home through the two national surveys. Additional details about the survey items and scoring approaches used are available in the DRC Child Health Indicator SAS and SPSS codebooks for each survey.
Unknown values (responses coded as "refused", "don't know", or missing) are not included in the denominator when calculating prevalence estimates and weighted population counts displayed in the results tables. The proportion of unknown values is less than 1% for most of the survey items. In nearly all cases, the exclusion of these values does not affect the prevalence estimates (%) and only marginally affects the weighted population counts (Pop. Est.). Income, race/ethnicity and BMI-for-age are notable exceptions. See the survey SAS and SPSS codebooks for more information. Please click here if you have further questions.
Both the NS-CSHCN and NSCH surveys use the same CSHCN Screener but apply and administer it differently. We at the Data Resource Center think this difference leads to a more concentrated/robust group of CSHCN for the NS-CSHCN and a larger group of CSHCN for the NSCH. Read more about the variation across surveys in CSHCN prevalence in this article from the Maternal and Child Health Journal.
The CSHCN Screener is a five-item parent-reported tool designed to identify children across the range and diversity of childhood chronic conditions and special needs. You can learn more by reading CSHCN Screener Fast Facts, or visit the Children with Special Health Care Needs section of the CAHMI website. Learn more about who CSHCN are by reading our two-page brief called "Who are CSHCN?"
What does it mean that the data from these surveys are “parent-reported’? Is parent-reported data valid? [return to top]
“Parent-reported” data means that the surveys are completed by a parent, guardian or other adult familiar with the child and the child’s health. This differs from electronic medical record data or other clinical data reported by hospitals, clinicians or administrators. Data from parents, who know their children better than anyone, are critical to having a full understanding of the broad spectrum of child health. Below are some resources comparing parent-reported data with other data sources.
Patients providing the answers: narrowing the gap in data quality for emergency care.
Quality and Safe Health Care, May 2010
The value of patient self-report for disease surveillance.
J Am Med Inform Assoc., Nov-Dec 2007
Parents as partners in obtaining the medication history.
J Am Med Inform Assoc, May-June 2005
Patients as experts: a collaborative performance support system.
Proc AMIA Symp, 1999.
Parents as direct contributors to the medical record: validation of their electronic input.
Ann Emerg Med., April 2000.
Data quality and the electronic medical record: a role for direct parental data entry.
Proc AMIA Symp, 1999.
Using the DRC and the Surveys
The Articles page on our website is your best resource for a list of current publications. There you will find dozens of articles that have used the surveys. We do our best to keep the articles section of our website updated, however you can also try searching in PubMed for additional articles.
Each data results or state data snapshot page on our website has a citation at the bottom of the results. Please use this context-specific citation information whenever possible. If a citation is not included on a screen then please use the following more general citation:
[Insert name and year of survey]. Child and Adolescent Health Measurement Initiative, Data Resource Center on Child and Adolescent Health website. Retrieved [mm/dd/yy] from [website address].
The DRC makes it easy to receive technical assistance for questions related to understanding data and using our website or data from the national surveys hosted here. Just follow the link to the Ask Us a Question page and type your question into the query box. The DRC Staff makes every effort to respond to your email within 2 to 3 business days.
Yes. More complicated queries can be completed by using the Ask Us a Question link to email us with the topic and subgroups of interest.
In addition, we do offer the full NSCH, NS-CSHCN, NHIS-Child, NHIS CAM supplement, and Pathways datasets in both SPSS and SAS formats with all the publicly released variables plus all the indicator variables and MCHB core outcomes available on our website. Also included in the dataset are relevant socio-demographic and health stratifiers. The first step is to request a copy so we can send you a Data Request and Data Use Agreement forms by visiting the Request a Dataset page.
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.
The DRC supports Microsoft Internet Explorer, Mozilla Firefox and Safari. If you do not have any of these browsers, visit the Microsoft Internet Explorer site, the Mozilla Firefox site, or the Safari site to download a free copy.
The DRC encourages users to link to our site. Please use the URL http://www.childhealthdata.org to the DRC and we suggest the following text to describe our work:
“The Data Resource Center for Child and Adolescent Health provides online access to survey data from the National Survey of Children’s Health and the National Survey of Children with Special Health Care Needs. Our site allows users to compare state, regional, and nationwide results – plus access additional resources and personalized assistance for interpreting and reporting findings.”
Please visit the Contact Us page for more information.
The National Survey of Children's Health will be conducted again by the Census Bureau in 2016-17, with initial data expected in 2017. Among other changes, the new National Survey of Children’s Health will integrate two surveys: the NSCH and the National Survey of Children with Special Health Care Needs (NS-CSHCN). See the Census Bureau and MCHB websites for further information and updates on the integration of these two surveys.
DRC Indicator Datasets
What is included in the National Survey of Children’s Health (NSCH) data sets? [return to top]
DRC Indicator Data Sets for the three NSCH surveys (2003, 2007 and 2011/12) include all content in the public use file plus dozens of Key Child Health Indicator variables. These measures were developed collaboratively by the Data Resource Center, National Center for Health Statistics, Maternal and Child Health Bureau, and a national technical expert panel of child health researchers and policymakers. Also included in are indicators derived from survey content pertinent to Healthy People 2010 and key demographic variables, including CSHCN Screener results.
What is included in the National Survey of Children with Special Health Care Needs (NS-CSHCN) Indicator data sets? [return to top]
The 2009/10, 2005/06 and 2001 NS-CSHCN Data Resource Center data sets include all content from public use versions of CSHCN Interview files with relevant demographic information added from the Screener and Household files. These data sets feature measures for the Maternal and Child Health Bureau’s six Core Outcomes for CSHCN, as well as key child health indicators from the National Chartbook for each survey.
What is included in the National Health Interview Survey (NHIS) Complementary and Alternative Medicine (CAM) Supplement data sets? [return to top]
The 2012 NHIS Child CAM data set includes all content from the public use data files (Household, Family, Person, Sample Child, Child Complementary and Alternative Medicine Supplement and Imputed Income) merged at the child level. The constructed variables displayed on the DRC data query are also included in the dataset,
Do the data sets include local-level data? [return to top]
DRC Indicator Data Sets provide state and national level data. Zip codes are collected by the National Center for Health Statistics (NCHS), however, these data are not released in the public use data file due to confidentiality restrictions. It is possible to analyze these zip code data on site at the NCHS’ Research Data Center in Hyattsville, MD. Interested researchers must first submit a proposal to the Research Data Center. Go to www.cdc.gov/rdc for more information about the Research Data Center and the proposal process.
Synthetic estimates are also a way in which you can obtain local estimates using national data. A synthetic estimate is a prevalence estimate for a local area that is calculated by using descriptive or demographic data for local areas combined with state prevalence values. It is similar in concept to an indirect adjustment. A local estimate is most likely to differ from a state estimate if the demographic distribution at the local area differs from that of the state and the prevalence of the indicator varies by the same demographic factor. For more information on synthetic estimates, view our Local Uses of National and State Data Brief.
How do I cite an indicator dataset from the Data Resource Center? [return to top]
The DRC is funded by a cooperative agreement with the Maternal and Child Health Bureau to create both the online data query tool, as well as a key indicator data set and codebook. When using any of the information found on the Data Resource Center website, indicator data set and/or codebook, please use the citation below to ensure our continued funding to provide these free resources:
Child and Adolescent Health Measurement Initiative. [Insert name and year of survey] Enhanced Data File. Data Resource Center for Child and Adolescent Health. Retrieved [mm/dd/yy] from [website address].
How are DRC Indicator data sets different from National Center for Health Statistics data files? [return to top]
- The Data Resource Center Indicator data sets include additional derived variables not available in NCHS public use files for the NSCH and the NS-CSHCN
- The public use files from the National Center for Health Statistics are available in SAS format only
- Access to these data sets significantly reduces the time and knowledge required to construct key indicators and advances the standardized use of these indicators in research, education and policy
Where can I find out how derived variables in DRC data sets were conceptualized and constructed in SAS or SPSS? [return to top]
The DRC has published documentation for derived variables in DRC Indicator Data Sets and the DRC Online Data Queries in the form of SPSS and SAS codebooks. View and download codebooks for the NSCH, NS-CSHCN, NHIS-CAM, NHIS-Child, and Pathways datasets.
Is there a charge for data sets provided by the DRC? [return to top]
The Data Resource Center Indicator data sets are offered at no cost to federal, state or local government agencies, academic and not-for-profit researchers, educators, students, advocates, and other not-for profit organizations. For others there may be a nominal fee. Users must sign a data use agreement prior to receiving a data set.
What can I expect when I request a DRC Indicator dataset? [return to top]
Once we have received a request form and signed Data Use Agreement from you, we will send you an e-mail with information on how to access your account and download a compressed folder containing the dataset and supplementary information. This process typically takes less than 5 business days. Using your assigned username and password, you will be able to download a zip file containing the dataset, codebook and other relevant documentation.
What if I have additional questions? [return to top]
If you have questions or need assistance, ask us a question or send us an email.