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PEDIATRICS Vol. 102 No. 1 July 1998, pp. 117-123

An Epidemiologic Profile of Children With Special Health Care Needs

Received Aug 29, 1997; accepted Jan 27, 1998.

Paul W. Newacheck*, Bonnie StricklandDagger , Jack P. Shonkoff§, James M. Perrinparallel , Merle McPherson, Margaret McManus#, Cassie Lauver**, Harriette FoxDagger Dagger , and Polly Arango§§

From the * Department of Pediatrics and Institute for Health Policy Studies, University of California, San Francisco; the Dagger  Integrated Services Branch of the Maternal and Child Health Bureau; the § Florence Heller Graduate School, Brandeis University; the parallel  Ambulatory Care Programs at Massachusetts General Hospital; the  Division of Services for Children With Special Health Care Needs, Maternal and Child Health Bureau; # McManus Health Policy, Inc; the ** Bureau of Children, Youth and Families, State of Kansas; Dagger Dagger  Fox Health Policy Consultants; and §§ Family Voices.

Objective.  To present an epidemiologic profile of children with special health care needs using a new definition of the population developed by the federal Maternal and Child Health Bureau.

Methods.  We operationalized the new definition using the recently released 1994 National Health Interview Survey on Disability. Estimates are based on 30 032 completed interviews for children <18 years old. The overall response rate was 87%.

Results.  Eighteen percent of US children <18 years old in 1994, or 12.6 million children nationally, had a chronic physical, developmental, behavioral, or emotional condition and required health and related services of a type or amount beyond that required by children generally. This estimate includes children with existing special health care needs but excludes the at-risk population. Prevalence was higher for older children, boys, African-Americans, and children from low-income and single-parent households. Children with existing special health care needs had three times as many bed days and school absence days as other children. An estimated 11% of children with existing special health care needs were uninsured, 6% were without a usual source of health care, 18% were reported as dissatisfied with one or more aspects of care received at their usual source of care, and 13% had one or more unmet health needs in the past year.

Conclusions.  A substantial minority of US children were identified as having an existing special health care need using national survey data. Children with existing special health care needs are disproportionately poor and socially disadvantaged. Moreover, many of these children face significant barriers to health care.

Key words: children with special health care needs, chronic illness, children, National Health Interview Survey.


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Functional Disability and School Activity Limitations in 41 300 School-Age Children: Relationship to Medical Impairments
Pediatrics, March 1, 2003; 111(3): 548 - 553.
[Abstract] [Full Text] [PDF]


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PediatricsHome page
J. Reiss and R. Gibson
Health Care Transition: Destinations Unknown
Pediatrics, December 1, 2002; 110(6): 1307 - 1314.
[Abstract] [Full Text] [PDF]


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PediatricsHome page
P. Scal
Transition for Youth With Chronic Conditions: Primary Care Physicians' Approaches
Pediatrics, December 1, 2002; 110(6): 1315 - 1321.
[Abstract] [Full Text] [PDF]


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American Behavioral ScientistHome page
J. M. STILLION and D. PAPADATOU
Suffer the Children: An Examination of Psychosocial Issues in Children and Adolescents with Terminal Illness
American Behavioral Scientist, October 1, 2002; 46(2): 299 - 315.
[Abstract] [PDF]


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AJPHHome page
P. H. Wise, N. S. Wampler, W. Chavkin, and D. Romero
Chronic Illness Among Poor Children Enrolled in the Temporary Assistance for Needy Families Program
Am J Public Health, September 1, 2002; 92(9): 1458 - 1461.
[Abstract] [Full Text] [PDF]


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PediatricsHome page
D. M. Goodman, E. Mendez, C. Throop, and E. S. Ogata
Adult Survivors of Pediatric Illness: The Impact on Pediatric Hospitals
Pediatrics, September 1, 2002; 110(3): 583 - 589.
[Abstract] [Full Text] [PDF]


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Arch Pediatr Adolesc MedHome page
J. M. Neff, J. Valentine, A. Park, J. Hicks-Thomson, D. A. Christakis, J. Muldoon, and S. Churchill
Trends in Pediatric Hospitalizations of Children in Washington State by Insurance and Chronic Condition Status, 1991-1998
Arch Pediatr Adolesc Med, July 1, 2002; 156(7): 703 - 709.
[Abstract] [Full Text] [PDF]


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Arch Pediatr Adolesc MedHome page
R. G. Chernoff, H. T. Ireys, K. A. DeVet, and Y. J. Kim
A Randomized, Controlled Trial of a Community-Based Support Program for Families of Children With Chronic Illness: Pediatric Outcomes
Arch Pediatr Adolesc Med, June 1, 2002; 156(6): 533 - 539.
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Journal of Emotional and Behavioral DisordersHome page
T. Combs-Orme, C. A. Heflinger, and C. G. Simpkins
Comorbidity of Mental Health Problems and Chronic Health Conditions in Children
Journal of Emotional and Behavioral Disorders, January 1, 2002; 10(2): 116 - 125.
[Abstract] [PDF]


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Arch Pediatr Adolesc MedHome page
H. T. Ireys, R. Chernoff, K. A. DeVet, and Y. Kim
Maternal Outcomes of a Randomized Controlled Trial of a Community-Based Support Program for Families of Children With Chronic Illnesses
Arch Pediatr Adolesc Med, July 1, 2001; 155(7): 771 - 777.
[Abstract] [Full Text] [PDF]


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Arch Pediatr Adolesc MedHome page
M. H. Young, J. M. McMenamy, and E. C. Perrin
Parent Advisory Groups in Pediatric Practices: Parents' and Professionals' Perceptions
Arch Pediatr Adolesc Med, June 1, 2001; 155(6): 692 - 698.
[Abstract] [Full Text] [PDF]


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PediatricsHome page
J. B. Mitchell, G. Khatutsky, and N. L. Swigonski
Impact of the Oregon Health Plan on Children With Special Health Care Needs
Pediatrics, April 1, 2001; 107(4): 736 - 743.
[Abstract] [Full Text] [PDF]


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PediatricsHome page
N. P. Dosa, N. M. Boeing, N. MS, and R. K. Kanter
Excess Risk of Severe Acute Illness in Children With Chronic Health Conditions
Pediatrics, March 1, 2001; 107(3): 499 - 504.
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CLIN PEDIATRHome page
J. E. Farmer and L. Muhlenbruck
Telehealth for Children with Special Health Care Needs: Promoting Comprehensive Systems of Care
Clinical Pediatrics, February 1, 2001; 40(2): 93 - 98.
[Abstract] [PDF]


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Asia Pac J Public HealthHome page
L. B. Meuleners, A. H. Lee, and C. W. Binns
Assessing Quality of Life for Adolescents in Western Australia
Asia Pac J Public Health, January 1, 2001; 13(1): 40 - 44.
[Abstract] [PDF]


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PediatricsHome page
L. Leslie, P. Rappo, H. Abelson, R. R. Jenkins, S. R. Sewall, H. J. Mulvey, E. R. Alden, J. L. Simon, and R. W. Chesney
Final Report of the FOPE II Pediatric Generalists of the Future Workgroup
Pediatrics, November 1, 2000; 106(5): 1199e - 1199.
[Abstract] [Full Text]


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PediatricsHome page
M. Hack, H. G. Taylor, N. Klein, and N. Mercuri-Minich
Functional Limitations and Special Health Care Needs of 10- to 14-Year-Old Children Weighing Less Than 750 Grams at Birth
Pediatrics, September 1, 2000; 106(3): 554 - 560.
[Abstract] [Full Text]


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PediatricsHome page
P. W. Newacheck, M. McManus, H. B. Fox, Y.-Y. Hung, and N. Halfon
Access to Health Care for Children With Special Health Care Needs
Pediatrics, April 1, 2000; 105(4): 760 - 766.
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PediatricsHome page
The Future of Pediatric Education II: Organizing Pediatric Education to Meet the Needs of Infants, Children, Adolescents, and Young Adults in the 21st Century
Pediatrics, January 1, 2000; 105(1): 163 - 212.
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