Barriers to care for children and youth with special health care needs: Perceptions of illinois pediatricians

Clinical Pediatrics

Volumn 51, Issue 1, 2012, Pages 39-45

  Agrawal, Rishi ^a,b   Shah, Parag ^a,b   Zebracki, Kathy ^c,d   Sanabria, Kathy ^e   Kohrman, Claire ^f   Kohrman, Arthur F ^a  

^a NORTHWESTERN UNIVERSITY   (United States)

^b CHILDREN'S MEMORIAL HOSPITAL   (United States)

^c SHRINERS HOSPITALS FOR CHILDREN   (United States)

^d RUSH MEDICAL COLLEGE   (United States)

^e AMERICAN ACADEMY OF PEDIATRICS   (United States)

^f Westside Health Authority   (United States)

Author keywords

children; children and youth with special health care needs; chronic illness; health services research; medical home; pediatrics; primary care; technology dependence

Indexed keywords

ARTICLE; BILLING AND CLAIMS; BLOOD GLUCOSE MONITORING; CHILD CARE; CROSS-SECTIONAL STUDY; DIALYSIS; EARLY INTERVENTION; FEMALE; HEALTH CARE ACCESS; HEALTH CARE NEED; HEALTH SURVEY; HUMAN; JUVENILE; MALE; PATIENT CODING; PEDIATRICIAN; PRIMARY MEDICAL CARE; REIMBURSEMENT; TASK PERFORMANCE; UNITED STATES; WORKING TIME;

ADOLESCENT; ATTITUDE OF HEALTH PERSONNEL; CHILD; CHILD HEALTH SERVICES; CROSS-SECTIONAL STUDIES; DISABLED CHILDREN; HEALTH SERVICES NEEDS AND DEMAND; HEALTH SERVICES RESEARCH; HUMANS; ILLINOIS; PHYSICIANS; PRIMARY HEALTH CARE; QUESTIONNAIRES;

EID: 84855412668     PISSN: 00099228     EISSN: 19382707     Source Type: Journal    
DOI: 10.1177/0009922811417288     Document Type: Article

References (39)

1. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics. 1998 ; 102 (1 pt 1). 137-140 (Pubitemid 28309258)
2. Neff JM, Sharp VL, Muldoon J, Graham J, Myers K. Profile of medical charges for children by health status group and severity level in a Washington State Health Plan. Health Serv Res. 2004 ; 39: 73-89 (Pubitemid 38124792)
3. National Survey of Children With Special Health Care Needs, Chartpack 2005-2006. Rockville, MD: US Department of Health and Human Services ; 2007:
4. Bramlett MD, Blumberg SJ. Prevalence of children with special health care needs in metropolitan and micropolitan statistical areas in the United States. Matern Child Health J. 2008 ; 12: 488-498
5. 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: 10-17 (Pubitemid 40070637)
6. Kuhlthau K, Perrin JM, Ettner SL, McLaughlin TJ, Gortmaker SL. High-expenditure children with Supplemental Security Income. Pediatrics. 1998 ; 102 (3 pt 1). 610-615 (Pubitemid 28409261)
7. Perrin JM, Kuhlthau K, Walker DK, Stein RE, Newacheck PW, Gortmaker SL. Monitoring health care for children with chronic conditions in a managed care environment. Matern Child Health J. 1997 ; 1: 15-23
8. Neff JM, Anderson G. Protecting children with chronic illness in a competitive marketplace. JAMA. 1995 ; 274: 1866-1869 (Pubitemid 26001264)
9. 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)
10. Looman WS, O'Conner-Von SK, Ferski GJ, Hildenbrand DA. Financial and employment problems in families of children with special health care needs: implications for research and practice. J Pediatr Health Care. 2009 ; 23: 117-125
11. Hill KS, Freeman LC, Yucel RM, Kuhlthau KA. Unmet need among children with special health care needs in Massachusetts. Matern Child Health J. 2008 ; 12: 650-661
12. Chen AY, Newacheck PW. Insurance coverage and financial burden for families of children with special health care needs. Ambul Pediatr. 2006 ; 6: 204-209
13. Mulvihill BA, Wingate MS, Altarac M, et al. The association of child condition severity with family functioning and relationship with health care providers among children and youth with special health care needs in Alabama. Matern Child Health J. 2005 ; 9 (2 suppl). S87 - S97 (Pubitemid 40959173)
14. Mitchell JM, Gaskin DJ. Do children receiving Supplemental Security Income who are enrolled in Medicaid fare better under a fee-for-service or comprehensive capitation model?. Pediatrics. 2004 ; 114: 196-204 (Pubitemid 38857586)
15. Mayer ML, Skinner AC, Slifkin RT. Unmet need for routine and specialty care: data from the National Survey of Children With Special Health Care Needs. Pediatrics. 2004 ; 113: e109 - e115
16. Sia C, Tonniges TF, Osterhus E, Taba S. History of the medical home concept. Pediatrics. 2004 ; 113 (5 suppl). 1473-1478 (Pubitemid 38580667)
17. Pediatrics. 2002 ; 110 (1 pt 1). 184-186
18. Malouin RA, Turner J. A review of the evidence for the medical home for children with special health care needs. Pediatrics. 2009 ; 123: e369
19. Van Cleave J, Davis MM. Preventive care utilization among children with and without special health care needs: associations with unmet need. Ambul Pediatr. 2008 ; 8: 305-311
20. Strickland B, McPherson M, Weissman G, van Dyck P, Huang ZJ, Newacheck P. Access to the medical home: results of the National Survey of Children with Special Health Care Needs. Pediatrics. 2004 ; 113 (5 suppl). 1485-1492 (Pubitemid 38580669)
21. Palfrey JS, Sofis LA, Davidson EJ, Liu J, Freeman L, Ganz ML. The Pediatric Alliance for Coordinated Care: evaluation of a medical home model. Pediatrics. 2004 ; 113 (5 suppl). 1507-1516 (Pubitemid 38584576)
22. McBurney PG, Simpson KN, Darden PM. Potential cost savings of decreased emergency department visits through increased continuity in a pediatric medical home. Ambul Pediatr. 2004 ; 4: 204-208 (Pubitemid 38779936)
23. Antonelli RC, Antonelli DM. Providing a medical home: the cost of care coordination services in a community-based, general pediatric practice. Pediatrics. 2004 ; 113 (5 suppl). 1522-1528 (Pubitemid 38580673)
24. Sneed RC, May WL, Stencel C. Physicians' reliance on specialists, therapists, and vendors when prescribing therapies and durable medical equipment for children with special health care needs. Pediatrics. 2001 ; 107: 1283-1290 (Pubitemid 32525203)
25. Sneed RC, May WL, Stencel CS. Training of pediatricians in care of physical disabilities in children with special health needs: results of a two-state survey of practicing pediatricians and national resident training programs. Pediatrics. 2000 ; 105 (3 pt 1). 554-561 (Pubitemid 30129671)
26. Sanabria K, Onufur C On-Site Medical Home Practice/Clinic Assessment Checklist, Illinois Medical Home Project Phase II. Chicago, IL: Illinois Chapter of American Academy of Pediatrics ; 2006:
27. Epstein SG, Taylor AB, Halberg AS Shared Responsibilities: Ensuring Quality Managed Care for Children With Special Health Care Needs-Toolkit. Boston, MA: New England Serve ; 1998:
28. Epstein SG, Taylor AB Assessing the Quality of Managed Care for Children With Special Health Care Needs: Summary of a Regional Survey of Families, Primary Care Providers and Managed Care Organizations in New England. Boston, MA: New England Serve ; 1997:
29. SanabriaK. "Fw: Paper." to Rishi Agrawal; June 19, 2009. Email.
30. Data Sources: 2000 US Physician Supply Data and 2000 US Census Data. Chicago, IL: American Academy of Pediatrics ; 2000:
31. Gordon JB, Colby HH, Bartelt T, Jablonski D, Krauthoefer ML, Havens P. A tertiary care-primary care partnership model for medically complex and fragile children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007 ; 161: 937-944 (Pubitemid 47529410)
32. Antonelli RC, Stille CJ, Antonelli DM. Care coordination for children and youth with special health care needs: a descriptive, multisite study of activities, personnel costs, and outcomes. Pediatrics. 2008 ; 122: e209 - e216
33. McAllister JW, Presler E, Turchi RM, Antonelli RC. Achieving effective care coordination in the medical home. Pediatr Ann. 2009 ; 38: 491-497
34. National Center for Medical Home Implementation. Coding fact sheets. Elk Grove Village, IL: American Academy of Pediatrics. http://www.medicalhomeinfo. org/how/payment-and-finance/#coding. Accessed November 22, 2010.
35. Onufer C. Illinois Medical Home Project Final Report: Illinois Chapter, American Academy of Pediatrics. 2009 ;:
36. Klitzner TS, Rabbitt LA, Chang RK. Benefits of care coordination for children with complex disease: a pilot medical home project in a resident teaching clinic. J Pediatr. 2010 ; 156: 1006-1010
37. Lyle R, Casey P, Bird T, et al. The impact of a special clinical program focused on medically complex children on state Medicaid costs. ; Vancouver, Canada ;..
38. Partridge JC, Sendowski MD, Drey EA, Martinez AM. Resuscitation of likely nonviable newborns: would neonatology practices in California change if the Born-Alive Infants Protection Act were enforced?. Pediatrics. 2009 ; 123: 1088-1094
39. Guillet R, Kwon JM. Prophylactic phenobarbital administration after resolution of neonatal seizures: survey of current practice. Pediatrics. 2008 ; 122: 731-735