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Center for Large Data Research & Data Sharing in Rehabilitation

Rehabilitation Dataset Directory: Dataset Profile

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

Basic Information
Dataset full name: The National Survey of Children with Special Health Care Needs
Dataset acronym NS-CSHCN
Summary The NS-CSHCN provides a consistent source of both National and State-level data on the size and characteristics of the population of CSHCN. This survey provides detailed information regarding the prevalence of CSHCN as well as the demographic characteristics of these children and their families, their physical, emotional and behavioral heath, the types of health and support services they and their families need, and their access to and satisfaction with the care they receive. Trends can be compared across the 3 waves of data collected.
Key Terms Children, Child(ren) with Special Health Care Needs, State level
Study Design Cross-sectional
Data Type(s) Survey
Sponsoring Agency/Entity Department of Health and Human Services (HHS): Maternal and Child Health Bureau (MCHB)
Health conditions/Disability measures
Health condition(s) ADD/ADHD, Depression, Anxiety problems, Behavioral or conduct problems, Autism, Asperger’s Disorder, pervasive developmental disorder, or other autism spectrum disorder, Developmental delay, Intellectual disability or mental retardation, Asthma, Diabetes, Epilepsy or seizure disorder, Migraine or frequent headaches, Head injury, Heart problem, Blood problems, Cystic Fibrosis, Cerebral Palsy, Muscular Dystrophy, Down Syndrome, Arthritis/ joint problems, Allergies
Disability Measures Visual disability, Hearing disability, Cognitive impairment, Communication impairment, Activity & Functional limitations, Participation restrictions, Mobility aids
Measures/outcomes of interest
Topics Prevalence and number of CSHCN in each state, Percent of households with children with CSHCN, Health and functional status, Family characteristics, child demographics, Health care access, Satisfaction with healthcare, Unmet healthcare needs, Preventative medical and dental care, Health insurance and coverage adequacy, Access to community-based services, Transition to adulthood, Child's health impact on family
Sample Population Children ages 0-17 with Special Health Care Needs
Sample Size/Notes 40,242 detailed CSHCN interviews were collected during 2009-2010; at least 750 interviews were conducted in EACH state and the District of Columbia
Unit of Observation Individual
Geographic Coverage National
Geographic specificity State
Data Collection
Data Collection Mode Survey
Years Collected 2001, 2005-2006, 2009-2010
Data Collection Frequency Every 5 years
Strengths and limitations
Strengths Large sample size - adequate to perform state level analysis. Wide variety of health and disability measures including activity and functional limitations and participation restrictions as well as medical conditions and impairments. Comparisons can be made between the 3 waves of surveys (2001, 2005-6 and 2009-10). Well documented measures and data.
Limitations A number of the survey’s questions were revised or reordered, and some of the indicators have been re-defined, so some of the indicators cannot be compared between survey waves (see: )
Data details
Primary Website
Data Access
Data Access Requirements Public Use Dataset
Summary Tables/reports
Dataset components (where applicable) Household file: One observation per household (n=196,159)
Screener file: One observation for each child in the household (n=371,617)
Interview file: 1 CSHCN per household - Detailed CSHCN interview - (n=40,242)
Selected papers
Other Papers

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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

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