Health care needs of children with down syndrome and impact of health system performance on children and their families

Journal of Developmental and Behavioral Pediatrics

Volumn 33, Issue 3, 2012, Pages 214-220

  Phelps, Randall A ^a   Pinter, Joseph D ^a   Lollar, Donald J ^a   Medlen, Joan Guthrie ^b   Bethell, Christina D ^c  

^a OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^b Healthy Lifestyle Coaching for All Ages and Stages   (United States)

^c OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

Author keywords

disparities; Down syndrome

Indexed keywords

ADOLESCENT; CHILD; CHILD HEALTH CARE; COMPARATIVE STUDY; DOWN SYNDROME; ECONOMICS; FAMILY SIZE; FEMALE; HANDICAPPED CHILD; HEALTH CARE SURVEY; HUMAN; INFANT; INTELLECTUAL IMPAIRMENT; MALE; NEWBORN; PRESCHOOL CHILD; REVIEW; STANDARD; STATISTICS; UNITED STATES;

ADOLESCENT; CHILD; CHILD HEALTH SERVICES; CHILD, PRESCHOOL; DISABLED CHILDREN; DOWN SYNDROME; FAMILY CHARACTERISTICS; FEMALE; HEALTH CARE SURVEYS; HUMANS; INFANT; INFANT, NEWBORN; INTELLECTUAL DISABILITY; MALE; UNITED STATES;

EID: 84859746430     PISSN: 0196206X     EISSN: None     Source Type: Journal    
DOI: 10.1097/DBP.0b013e3182452dd8     Document Type: Review

References (24)

1. Centers for Disease Control and Prevention. Improved national prevalence estimates for 18 selected major birth defects-United States, 1999-2001. MMWR Morb Mortal Wkly Rep. 2006;54: 1301-1305.
2. Canfield MA, Honein MA, Yuskiv N, et al. National estimates and race/ethnic-specific variation of selected birth defects in the United States, 1999-2001. Birth Defects Res A Clin Mol Teratol. 2006;76:747-756.
3. National Down Syndrome Society. A promising future together: a guide for new and expectant parents. Available at http://www. ndss.org/images/stories/ NDSSresources/pdfs/ndssbrochure-lr. pdf. Accessed October 19, 2010.
4. Cohen WI, ed. Health care guidelines for individuals with Down syndrome. Down Syndrome Quarterly. 1999;4:1-15.
5. Bull MJ; the Committee on Genetics, American Academy of Pediatrics. Clinical report-Health supervision for children with Down syndrome. Pediatrics. 2011;128:393-406.
6. Schieve LA, Boulet SL, Boyle C, Rasmussen SA, Schendel D. Health of children 3 to 17 years of age with Down syndrome in the 1997-2005 National Health Interview Survey. Pediatrics. 2009;123:e253-e260.
7. Frid C, Anneren G, Rasmussen F, Sundelin C, Drott P. Utilization of medical care among children with Down's syndrome. J Intellect Disabil Res. 2002;46:310-317. (Pubitemid 34567663)
8. Kogan MD, Strickland BB, Newacheck PW. Building systems of care: findings from the National Survey of Children with Special Health Care Needs. Pediatrics. 2009;124 Suppl 4:S333-S336.
9. Brachlow AE, Ness KK, McPheeters ML, Gurney JG. Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health. Arch Pediatr Adolesc Med. 2007;161:399-405. (Pubitemid 46556372)
10. Boulet SL, Molinari NA, Grosse SD, Honein MA, Correa-Villasenor A. Health care expenditures for infants and young children with Down syndrome in a privately insured population. J Pediatr. 2008;153:241-246.
11. Siklos S, Kerns KA. Assessing need for social support in parents of children with autism and Down syndrome. J Autism Dev Disord. 2006;36:921-933. (Pubitemid 44440111)
12. Bourke J, Ricciardo B, Bebbington A, et al. Physical and mental health in mothers of children with Down syndrome. J Pediatr. 2008;153:320-326.
13. Ferris TG, Dougherty D, Blumenthal D, Perrin JM. A report care on quality improvement for children's health care. Pediatrics. 2001;107:143-155. (Pubitemid 32055429)
14. Davidoff AJ. Insurance for children with special health care needs: patterns of coverage and burden on families to provide adequate insurance. Pediatrics. 2004;114: 394-403. (Pubitemid 39006667)
15. Strickland BB, Singh GK, Kogan MD, Mann MY, van Dyck P, Newacheck PW. Access to the medical home: new findings from the 2005-2006 national survey of children with special health care needs. Pediatrics. 2009;123:e996-e1004.
16. Kuhlthau K, Hill KS, Yucel R, Perrin JM. Financial burden for families of children with special health care needs. Matern Child Health J. 2005;9:207-218. (Pubitemid 40983448)
17. McGrath RJ, Stransky ML, Cooley WC, Moeschler JB. National profile of children with Down Syndrome: disease burden, access to care, and family impact. J Pediatr. 2011;159:535-540.
18. 2005/06 National Survey of Children with Special Health Care Needs. Maternal and Child Health Bureau in collaboration with the National Center for Health Statistics. SPSS 2005/06 NS-CSHCN Indicator Data Set prepared by the Data Resource Center for Child and Adolescent Health, Child and Adolescent Health Measurement Initiative.
19. Child and Adolescent Health Measurement Initiative (CAHMI): Data Resource Center on Child and Adolescent Health. Available at http://www.cshcndata.org and http://www.childhealthdata. org. Accessed October 13, 2010.
20. Blumberg SJ, Welch EM, Chowdhury SR, Upchurch HL, Parker EK, Skalland BJ. Design and operation of the National Survey of Children with Special Health Care Needs, 2005-2006. Vital Health Stat. 2008;45:1-188.
21. Bethell CD, Read D, Stein RE, Blumber SJ, Wells N, Newacheck PW. Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr. 2002;1:38-48. (Pubitemid 44133341)
22. Shin M, Besser LM, Kucik JE, Lu C, Siffel C, Correa A; Congenital Anomaly Multistate Prevalence and Survival Collaborative. Prevalence of Down syndrome among children and adolescents in 10 regions of the United States. Pediatrics. 2009;124:1565-1571.
23. American Association on Intellectual and Developmental Disabilities: about AIDD. Available at: http://www.aaidd.org. Accessed September 12, 2010.
24. Lollar DJ, Simeonsson RJ. Diagnosis to function: classification for children and youths. J Dev Behav Pediatr. 2005;26:323-330. (Pubitemid 41272193)