Frequently Asked Questions

1. What is the Data Resource Center (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 intrepertation 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.

2. Will the NS-CSHCN be collected again?  

Collection of data for the National Survey of Children with Special Health Care Needs is designed to alternate with collection for the National Survey of Children’s Health so that new data are available every 2 years, every 4 years per survey.

The NS-CSHCN was first collected in 2001-02 and the second administration in 2005-06. The third round of the NS-CSHCN is scheduled to begin in early 2009.

3. What is new in the 2005/2006 NS-CSHCN survey?  

In addition to increasing the sample size and collecting data for a national non-CSHCN referent sample for comparison, several additional topics and questions were added or modified. Below is a list of newly added or modified topics in the 2005/2006 NS-CSHCN:

Added

• List of current health conditions and functioning difficulties (document link)
  
• Primary language spoken in the home
  
• Unmet need for interpreters during health care visits
  
• Number of ER visits
  
• Number of specialty doctors
  
• Use of specific health care services
  
• Receipt of preventive dental care
  
• Reason for difficulty using community-based services
  
• Family Structure

Modified

• Care coordination questions
  
• Transition to adulthood

For more information on the 2005/2006 NS-CSHCN please visit the Fast Facts on the Learn About the Survey page.

4. Why is the survey sometimes called “SLAITS”?  

The sampling and data collection for the NS-CSHCN were conducted using the “State and Local Area Integrated Telephone Survey” or SLAITS. This approach was developed by the NCHS to collect information on a variety of health topics at the state and local levels.

For more information refer to the Fast Facts located on the Learn About the Survey page under your survey year of interest (2001 or 2005/2006).

5. Who sponsors the NS-CSHCN?  

The NS-CSHCN is sponsored by the Maternal and Child Health Bureau (MCHB) of the U.S. Department of Health and Human Services. Sampling and telephone interviews are directed by the National Center for Health Statistics (NCHS) of the Centers for Disease Control and Prevention.

For more information refer to the Fast Facts located on the Learn About the Survey page under your survey year of interest (2001 or 2005/2006).

6. Which browsers does the DRC support?  

The DRC supports Microsoft Internet Explorer and Mozilla Firefox. If you do not have either of these browsers, visit the Microsoft Internet Explorer site or the Mozilla Firefox site to download a free copy.

7. Are the NS-CSHCN data files available to the public?   

Yes. Downloading a copy of the dataset can be done in two ways. First, state-level datasets with all of the questions shown on the NS-CSHCN website are available in SAS and SPSS formats by clicking on the Request a Dataset link. Second, this dataset can also be downloaded in SAS format at no cost from the NCHS website: www.cdc.gov/nchs.

For more information refer to the Fast Facts located on the Learn About the Survey page under your survey year of interest (2001 or 2005/2006).

8. Is it possible to get a list of publications that have used the NS-CSHCN?  

The Articles page on our website is your best resource for a list of current publications. There you will find several articles that have used the NS-CSHCN.

http://www.cshcndata.org/Content/RelatedArticles.aspx

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

The standard citation for presentations, data query results, or information obtained through the DRC website is as follows:

Child and Adolescent Health Measurement Initiative. [insert name and year of survey]. Data Resource Center for Child and Adolescent Health website. Retrieved [mm/dd/yy] from [website address].

10. What is a HRSA region?  

The term “HRSA region” refers to the ten standard federal regions through which the Health Resources and Services Administration (HRSA) organizes and conducts its administrative activities. The 50 States, the District of Columbia, and the US territories are each assigned to a specific HRSA region.

The Health Resources and Services Administration (HRSA) is an agency of the U.S. Department of Health and Human Services. It is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable. The Maternal and Child Health Bureau, which sponsors the NSCH and the NS-CSHCN, is one of five the HRSA bureaus.

The ten standard Federal Regions were established by OMB (Office of Budget Management) Circular A-105, "Standard Federal Regions," in April, 1974. The Standard Federal Regions used by HRSA are:

11. What is a “medical home”?  

“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 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 Medical Home Policy Statement

American Academy of Pediatrics National Center of Medical Home Initiatives

Joint Principles of the Patient-Centered Medical Home

The presence of medical home is measured by both the NSCH and the NS-CSHCN. Each survey approaches the concept in slightly different ways due to the child populations on which the surveys focus. Despite differences in approach, both surveys generate overall summary scores for medical home and for relevant subcomponents. Additional details about the survey items and scoring approaches used are available in the DRC Child Health Indicator SAS and SPSS code for each survey. To access this code, visit the Learn About the Survey page and click on SAS/SPSS Program Code.

12. Why aren’t there any data on this website for Asian, American Indian, Alaska Native, or Native Hawaiian/Pacific Islander children?  

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 on these minority groups to the public. National Center for Health Statistics only includes individual level data for one of these minority groups in the publicly available data files when a group comprises 5% or more of the total child population in a State. This standard is in place to protect against the remote chance of an individual child inadvertently being identified in States with relatively few children from these minority groups in their populations.

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. For the analytic purposes of this website, children were assigned to one of five distinct categories according to the following criteria:

For 2003 NSCH and the 2001 NS-CSHCN, seven states have data in the publicly released data files for the race categories of Native American or Native Alaskan (AK, AZ, NM, MT, ND, OK, SD). Asian-specific race data is publicly available for five states (CA, NJ, NY, WA, HI). Only Hawaii has data released for the category Native Hawaiian/Pacific Islander.

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 minority 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 NS-CSHCN is available in the methods report for the survey. CLICK here to access this report.

13. What criteria are used to create the race/ethnicity categories available in the SEARCH THE DATA feature on this website?  

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. For the analytic purposes of this website, children were assigned to one of five distinct categories according to the following criteria:

Additional information about how data about children’s race/ethnicity were collected and processed for the NS-CSHCN is available in the methods report for the survey. CLICK here to access this report.

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

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 (Weighted Est.). Income, race/ethnicity and BMI-for-age are notable exceptions. See the data query documentation under "SAS/SPSS Program Code" for more information. If you have further questions please click here to contact us.

15. How can I find out which questions in the CSHCN survey were used to develop a specific child health indicator?   

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 link in blue text that appears at end of the questions and indicators listed on the "Choose a QUESTION to view results" page or in the title of a data results table.

16. Can the data collected by the NS-CSHCN be analyzed at the county or other sub-state geographic levels?  

Currently, the public use data file for the NS-CSHCN has state identifiers and a binominal variable identifying children living in the metropolitan statistical areas (MSA) with greater than 500,000 persons in each state. This indicator is suppressed whenever the population for the MSA or non-MSA area is less than 500,000 persons.

Zipcodes 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 zipcode 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: http://www.cdc.gov/rdc/, for more information about the Research Data Center and the proposal process.

17. Is it possible to look at two subgroups at the same time?  

Yes. More complicated queries can be completed by using the Ask A Question link to email us with the topic and subgroups of interest.

In addition, we do offer the full NS-CSHCN dataset in both SPSS and SAS formats with all the publicly released variables PLUS all the indicator variables and MCHB outcomes available to search on the 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.

18. Where can I find information about the sampling and administration methods used for the NS-CSHCN?  

What is the structure of the survey? How do you sample households in the United States? What questions are asked on the survey? What screening process was used to identify children with special health care needs? These questions and more can be answered by visiting Learn About the Surveys, selecting the year of interest, and clicking on each link to learn more.

19. How can I link to your site?  

The DRC encourages users to link to our site. Please use the URL http://www.childhealthdata.org link to the DRC and we suggest the following text to describe our work, “The Data Resource Center for the National Survey of Children's Health provides online access to the survey data that allows users to compare state, regional, and nationwide results – plus resources and personalized assistance for interpreting and reporting findings.”

Please visit the Link to Us page for more information.

20. How do I receive assistance if I’m having a hard time interpreting output from the NS-CSHCN?  

The DRC makes it easy to receive technical assistance for questions relating to data and website assistance. Just follow the link to the Ask 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.

21. Where can I find more answers to frequently asked questions?  

To find answers to additional questions, visit our Q & A Archive. Here you will be able to search an archive of questions asked by past users answered by DRC staff.

22. Why are there sometimes different estimates of CSHCN in different surveys?  

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. So, if you encounter a discrepancy in CSHCN prevalence when comparing our surveys, you may attribute the variation to the fact that the NS-CSHCN represents a more needy group of CSHCN and the NSCH captures more of CSHCN who are CSHCN but might have less severe issues (what some call the Gray Area cases).

Read more about the variation across surveys in CSHCN prevalence in this article from the Maternal Child Health Journal.

23. What is the CSHCN Screener?  

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. Learn more about the CSHCN Screener with the CAHMI's 1-page Fast Facts, or visit the Children with Special Health Care Needs section of the CAHMI website here.