About Children and Youth with Special Health Care Needs (CYSHCN)

Children and Youth with Special Health Care Needs (CYSHCN) are "those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally." [McPherson: 1998] Studies have found the prevalence of children in the United States meeting these criteria to be 12.8% [van: 2004] to 15.6% [Newacheck: 2005]. The National Survey of Children with Special Health Care Needs 2009/2010 found 15.1% of the nation's children met this definition of children with special health care needs. Child Health Data National Survey of CSHCN For information about the study and data for your state, see CSHCNdata.org.
The number of CYSHCN cared for by a primary care clinician and how often they are seen will depend on a number of factors, including the local prevalence of CYSCHN, how welcome their families feel in the practice, referrals by subspecialists, the breadth of insurance plans, including Medicaid and CHIP, with which the practice contracts, etc. The prevalence of children who meet criteria as CYSHCN, particularly if one does not include those deemed "at-risk," increases with age as chronic conditions develop and their needs for healthcare increase. Since the number of children in a pediatric practice usually ranges from about 1,800 to 2,500, the number of CYSHCN cared for by a given pediatrician would be expected to range from about 250 to 400.
CYSHCN include those with common, uncommon, and rare conditions. The Diagnosis Prevalence List extrapolates from published prevalence rates to predict the number of children with given conditions that would be expected in a pediatric practice (and allows you to change the total panel size to match your practice). The prevalence of chronic conditions in childhood ranges from 1 in 6 children (obesity), 1 in 11 (ADHD), and 1 in 20 (asthma) to 1 in 733 (Down syndrome, the most common chromosomal disorder), 1 in 4,500 (fragile X syndrome), 1 in 16,000 (MCADD), and 1/1,000,000 (Hurler syndrome). While the majority of CSHCN in a practice will have a relatively common condition, the majority of their conditions will be uncommon or rare. The Medical Home Portal aims to help clinicians find useful information and resources to help them care for CYSHCN in partnership with their families.
Myriad resources exist to guide clincians and to educate and support parents as they strive to provide the best care possible to assure optimal outcomes for their CYSHCN and their families. However, finding reliable, up-to-date information can be challenging, particularly when a lot of unreliable information is readily available. Finding helpful resources and local service providers, incuding pediatric specialty services, can be very difficult. We hope that this website will help – use the Feedback button at the top of the page to let us know how we can better serve your needs.

Resources

Information & Support

For Professionals

CSHCNdata.org
Provides extensive data about CSHCN for the nation and for each state; offered by the Child and Adolescent Health Measurement Initiative (CAHMI).

National Ambulatory Medical Care Survey
A national survey designed to meet the need for objective, reliable information about the provision and use of ambulatory medical care services in the United States. Findings are based on a sample of visits to nonfederally employed office-based physicians who are primarily engaged in direct patient care. Physicians in the specialties of anesthesiology, pathology, and radiology are excluded from the survey. The survey was conducted annually from 1973 to 1981, in 1985, and annually since 1989.

National Hospital Discharge Survey
A national probability survey designed to meet the need for information on characteristics of inpatients discharged from non-Federal short-stay hospitals in the United States. The NHDS collects data from a sample of approximately 270,000 inpatient records acquired from a national sample of about 500 hospitals. Only hospitals with an average length of stay of fewer than 30 days for all patients, general hospitals, or children's general hospitals are included in the survey. Federal, military, and Department of Veterans Affairs hospitals, as well as hospital units of institutions (such as prison hospitals), and hospitals with fewer than six beds staffed for patient use, are excluded.

Medical Home Training and Education (AAP)
From the American Academy of Pediatrics, this page provides resources for medical providers to improve care for patients and includes toolkits, links to information about Medical Home, CME resources, and more.

Genetics in Primary Care Institute (AAP)
The goal of this site is to increase collaboration in the care of children with known or suspected genetic disorders. Includes health supervision guidelines and other useful resources; a collaboration among the Health Resources & Services Administration, the Maternal and Child Health Bureau, and the American Academy of Pediatrics.

Children & Youth with Special Health Care Needs Knowledge Path (MCH Library)
Compilation of reports, websites, data, etc. from the National Center for Education in Maternal and Child Health's MCH Library, based at Georgetown University.

For Parents and Patients

Support

Kids and Teens with Special Health Care Needs Resources for Families (MCH Library)
Compilation of materials, websites, and other resources for parents and families from the National Center for Education in Maternal and Child Healths's MCH Library, based at Georgetown University.

Helpful Articles

Haggerty RJ.
Caring for children with special needs: historical perspective.
Acad Pediatr. 2011;11(2):107-9. PubMed abstract

Long WE, Bauchner H, Sege RD, Cabral HJ, Garg A.
The value of the medical home for children without special health care needs.
Pediatrics. 2012;129(1):87-98. PubMed abstract

Romaire MA, Bell JF, Grossman DC.
Medical Home Access and Health Care Use and Expenditures Among Children With Special Health Care Needs.
Arch Pediatr Adolesc Med. 2011. PubMed abstract

Bethell CD, Kogan MD, Strickland BB, Schor EL, Robertson J, Newacheck PW.
A national and state profile of leading health problems and health care quality for US children: key insurance disparities and across-state variations.
Acad Pediatr. 2011;11(3 Suppl):S22-33. PubMed abstract

Strickland BB, van Dyck PC, Kogan MD, Lauver C, Blumberg SJ, Bethell CD, Newacheck PW.
Assessing and ensuring a comprehensive system of services for children with special health care needs: a public health approach.
Am J Public Health. 2011;101(2):224-31. PubMed abstract

Palfrey JS, Huntington NL, Yusuf A, Foley SM, Nary D, Jenkins R.
Viewing services for children and youth with special health care needs through a community lens.
Pediatrics. 2010;126 Suppl 3:S107-10. PubMed abstract / Full Text

Kuo DZ, Bird TM, Tilford JM.
Associations of family-centered care with health care outcomes for children with special health care needs.
Matern Child Health J. 2011;15(6):794-805. PubMed abstract

Authors

Author: Chuck Norlin, MD - 1/2009
Content Last Updated: 1/2015

Page Bibliography

McPherson M, Arango P, Fox H, Lauver C, McManus M, Newacheck PW, Perrin JM, Shonkoff JP, Strickland B.
A new definition of children with special health care needs.
Pediatrics. 1998;102(1 Pt 1):137-40. PubMed abstract

Newacheck PW, Kim SE.
A national profile of health care utilization and expenditures for children with special health care needs.
Arch Pediatr Adolesc Med. 2005;159(1):10-7. PubMed abstract

van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW.
Prevalence and characteristics of children with special health care needs.
Arch Pediatr Adolesc Med. 2004;158(9):884-90. PubMed abstract