|Dataset Full Name||The National Survey of Children with Special Health Care Needs|
The NS-CSHCN provides a consistent source of data for all fifty U.S. states, the District of Columbia, and the U.S. Virgin Islands 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 waves of data collected.
Note that for 2016-2017 and beyond, the content of the NS-CSHCN is incorporated into the National Survey of Children’s Health (NSCH).
|Key Terms||Children, Child(ren) with Special Health Care Needs, State level|
|Sponsoring Agency/Entity||Department of Health and Human Services (HHS)
Health Resources and Services Administration (HRSA)
Maternal and Child Health Bureau (MCHB)
|Health Conditions/Disability Measures|
ADD/ADHD, Allergies, Anxiety disorders, Arthritis, Autism spectrum disorders, Blood disorder, Body mass index (BMI)/obesity, Cardiovascular conditions, Cerebral palsy, Chronic pain, Depression, Diabetes, Down syndrome, Epilepsy or seizure disorder, Migraine or frequent headaches, Muscular dystrophy, Pulmonary disorders, Traumatic brain injury (TBI)
|Disability Measures||Ambulatory disability, Cognitive disability, Communication impairment, Developmental disabilities, Functional limitations (ADLs and/or IADLs), Hearing disability, Independent living disability, Intellectual disability, Mental health disability, Self-care disability, Special equipment use/assistive technology, Visual disability||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|
|Sample Population||Children ages 0-17 with Special Health Care Needs|
|Sample Size/Notes||40,586 detailed CSHCN interviews were collected during 2009-2010; with a minimum of 750 interviews conducted for EACH state, the District of Columbia, and the U.S. Virgin Islands.|
|Unit of Observation||Individual|
|Data Collection Mode||Survey|
|Years Collected||2001, 2005-2006, 2009-2010, 2016-2017 (as part of the NSCH)|
|Data Collection Frequency||
Prior to 2016-2017: Every 5 years
2016-2017 and beyond (as part of the NSCH): Annual
|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 waves of surveys (2001, 2005-2006 2009-2010, and as part of the NSCH for 2016-2017 and beyond). 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. More information about survey revisions is available at: http://childhealthdata.org/learn/NS-CSHCN/resources/survey-revisions||Data Details|
Public Use dataset (original SAS version):
Data Use agreement (SPSS, SAS, and STATA with formats and labels): http://childhealthdata.org/help/dataset
|Data Access Requirements||
Public Use Dataset (original SAS version) Data Use agreement, No cost
Data Use agreement, $ cost (fee may apply to certain for-profit organizations)
|Similar/Related Dataset(s)||Selected papers|
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