Optimizing health and health care systems for children with special health care needs using the life course perspective

Maternal and Child Health Journal

Volumn 18, Issue 2, 2014, Pages 467-477

  Bethell, Christina D ^a   Newacheck, Paul W ^b   Fine, Amy ^c   Strickland, Bonnie B ^d   Antonelli, Richard C ^e   Wilhelm, Cambria L ^a   Honberg, Lynda E ^d   Wells, Nora ^f  

^a OREGON HEALTH AND SCIENCE UNIVERSITY   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

^c Center for the Study of Social Policy   (United States)

^d HEALTH RESOURCES AND SERVICES ADMINISTRATION   (United States)

^e BOSTON CHILDREN S HOSPITAL   (United States)

^f Family Voices Inc   (United States)

Author keywords

Children; Children with special health care needs; Health care quality; Life course; Medical home

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; CHRONIC DISEASE; COMORBIDITY; FEMALE; HANDICAPPED CHILD; HEALTH CARE QUALITY; HEALTH PROMOTION; HEALTH SURVEY; HUMAN; HUMAN DEVELOPMENT; INFANT; MALE; NEWBORN; ORGANIZATION AND MANAGEMENT; PATIENT CARE; PRESCHOOL CHILD; PREVALENCE; SOCIAL DETERMINANTS OF HEALTH; STANDARD; STATISTICS; UNITED STATES;

ADOLESCENT; ADULT; CHILD; CHILD, PRESCHOOL; CHRONIC DISEASE; COMORBIDITY; DISABLED CHILDREN; FEMALE; HEALTH PROMOTION; HEALTH SURVEYS; HUMAN DEVELOPMENT; HUMANS; INFANT; INFANT, NEWBORN; MALE; PATIENT-CENTERED CARE; PREVALENCE; QUALITY OF HEALTH CARE; SOCIAL DETERMINANTS OF HEALTH; UNITED STATES;

EID: 84893190492     PISSN: 10927875     EISSN: 15736628     Source Type: Journal    
DOI: 10.1007/s10995-013-1371-1     Document Type: Review

References (49)

1. Fine, A.; Kotelchuck, M. (2010). Rethinking MCH: The life course model as an organizing framework. Rockville, MD: U.S. Department of Health and Human Services. Available from http://mchb.hrsa.gov/lifecourse/ rethinkingmchlifecourse.pdf.
2. Forrest, C. B.; Riley, A. W. (2004). Childhood origins of adult health: A basis for life-course health policy. Health Affairs (Millwood), 23(5), 155-164.
3. Wise, P. H. (2009). Confronting social disparities in child health: A critical appraisal of life-course science and research. Pediatrics, 124(Suppl 3), S203-S211.
4. Halfon, N.; Hochstein, M. (2002). Life course health development: An integrated framework for developing health policy, and research. The Milbank Quarterly, 80(3), 433-479.
5. Cooley, W. C. (2004). Redefining primary pediatric care for children with special health care needs: The primary care medical home. Current Opinion in Pediatrics, 16(6), 689-692.
6. Wagner, E. H.; Austin, B. T.; David, C.; et al. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs (Millwood), 20(6), 64-78.
7. Turkel, S.; Pao, M. (2007). Late consequences of pediatric chronic illness. Psychiatric Clinics of North America, 30(4), 819-835.
8. Case, A.; Fertig, A.; Paxson, C. (2005). The lasting impact of childhood health and circumstance. Journal of Health Economics, 24(2), 365-389.
9. Delaney, L.; Smith, J. P. (2012). Childhood health: Trends and consequences over the life course. Future of Children, 22(1), 43-63.
10. Elo, I. T.; Preston, S. (1992). Effects of early-life conditions on adult mortality: A review. Population Index, 58(2), 186-212.
11. Smith, J. P.; Smith, G. C. (2010). Long-term economic costs of psychological problems during childhood. Social Science and Medicine, 7(1), 110-115.
12. Power, C.; Peckham, C. (1990). Childhood morbidity and adulthood ill health. Journal of Epidemiology and Community Health, 44(1), 69-74.
13. McPherson, M.; Arango, P.; Fox, H.; et al. (1998). A new definition of children with special health care needs. Pediatrics, 102, 137-140.
14. Child and Adolescent Health Measurement Initiative. (2011). Who are children with special health care needs. Accessed October 15, 2012, at http://www.childhealthdata.org/docs/nsch-docs/whoarecshcn-revised-07b-pdf.pdf.
15. Park, M. J.; Adams, S. H.; Irwin, C. E.; Jr. (2011). Health care services and the transition to young adulthood: Challenges and opportunities. Academic Pediatric, 11(2), 115-122.
16. Bethell, C. D.; Read, D.; Blumberg, S. J.; et al. (2008). What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. MCH Journal, 12(1), 1-14.
17. Power, C.; Hertzman, C. (1997). Social and biological pathways linking early life and adult disease. British Medical Bulletin, 53(1), 210-221.
18. Hertzman, C.; Boyce, T. (2010). How experience gets under the skin to create gradients in developmental health. Annual Review of Public Health, 31, 329-347.
19. Halfon, N.; Houtrow, A.; Larson, K.; et al. (2012). The changing landscape of disability in childhood. Future of Children, 22(1), 13-42.
20. Perrin, J. M.; Bloom, S. R.; Gortmaker, S. L. (2007). The increase of childhood chronic conditions in the United States. The Journal of American Medical Association, 297(24), 2755-2759.
21. The Child and Adolescent Health Measurement Initiative, & Data Resource Center for Child and Adolescent Health. (2009). Parenting & family life: A national profile, 2007 National Survey of Children's Health. Accessed on October 15, 2012, at http://www.childhealthdata.org/docs/nsch-docs/parent- profile-final-pdf.pdf.
22. Child and Adolescent Health Measurement Initiative, & Data Resource Center for Child and Adolescent Health. Data brief: Overview of adverse child and family experiences, 2011-2012 National Survey of Children's Health. Accessed on May 21, 2013, at http://www.childhealthdata.org/docs/drc/aces-data-brief- version-1-0.pdf?Status=Master.
23. Bethell, C. D.; Kogan, M. D.; Strickland, B. B.; Schor, E. L.; Robertson, J.; Newacheck, P. W. (2011). A national and state profile of leading health problems and health care quality for US children: Key insurance disparities and across-state variations. Academic Pediatrics, 11(Suppl 3), S22-S33.
24. U.S. Department of Health and Human Services, Health Resources and Services Administration, & Maternal and Child Health Bureau. (2011). The National Survey of Children's Health 2007: Children with special health care needs in context: A portraits of states and the nation. Rockville, Maryland: U.S. Department of Health and Human Services. Accessed on October 15, 2012, at http://mchb.hrsa.gov/nsch/07cshcn/.
25. Berry, J. G.; Bloom, S.; Foley, S.; et al. (2010). Health inequity in children and youth with chronic health conditions. Pediatrics, 126(Suppl 3), S111-S119.
26. Hirsch, G.; Homer, J.; Milstein, B.; et al. (2012). Rethink health dynamics: Understanding and influencing local health system change. Paper presented at 30th international conference of the system dynamics society, July 2012, St. Gallen, Switzerland. Accessed on October 15, 2012, at www.systemdynamics.org.
27. McDaniel, R. R.; Driebe, D. J. (2001). Complexity science and health care management. Advances in Health Care Management, 2, 11-36.
28. Kane, R. L.; Priester, R.; Totten, A. (2005). Meeting the challenge of chronic illness. Baltimore, MD: Johns Hopkins University Press.
29. Child and Adolescent Health Measurement Initiative, & Data Resource Center for Child and Adolescent Health. (2011). CSHCN systems of care core outcomes 2009-2010 NS-CSHCN. Accessed on October 15, 2012, at http://www.childhealthdata.org/action/databriefs#CSHCN.
30. Child and Adolescent Health Measurement Initiative, & Data Resource Center for Child and Adolescent Health. (2011). System of care for CSHCN: CSHCN meeting all age-relevant core outcomes. Accessed October 15, 2012, at http://childhealthdata.org/docs/cshcn/met-all-outcomes.pdf?Status=Master.
31. Child and Adolescent Health Measurement Initiative, & Data Resource Center for Child and Adolescent Health. (2011). Outcome #2: Coordinated, ongoing, comprehensive care within a medical home. Accessed October 15, 2012, at http://childhealthdata.org/docs/cshcn/outcome-2.pdf?Status=Master.
32. Child and Adolescent Health Measurement Initiative, & Data Resource Center for Child and Adolescent Health. (2011). CSHCN systems of care core outcomes 2009-2010 NS-CSHCN findings profiles. Accessed on October 15, 2012, at http://www.childhealthdata.org/action/databriefs#CSHCN.
33. Bethell, C. D.; Forrest, C. B.; Stumbo, S.; et al. (2012). Factors promoting or potentially impeding school success: Disparities and state variations for children with special health care needs. Maternal and Child Health Journal, 16(1), S35-S43.
34. Kent, A. L. (2012). Developmental origins of health and adult disease: What should neonatologists/paediatricians be considering about the long-term health of their patients? Journal of Paediatrics and Child Health, 48(9), 730-734.
35. Houk, V. N.; Thacker, S. B. (1989). The centers for disease control program to prevent primary and secondary disabilities in the United States. Public Health Reports, 104(3), 226-231.
36. Adverse Childhood Experiences Study (CDC and Kaiser Permanente, see http://www.ACEstudy.org) The Damaging Consequences of Violence and Trauma (see http://www.NASMHPD.org) and Trauma and Recovery (J. Herman). Cost data: 2007 Economic Impact Study (PCAA). Chart created by Ann Jennings, PhD. http://www.TheAnnaInstitute.org. Revision April 6, 2010.
37. Felitti, V. J.; Anda, R. F.; Nordenberg, D.; et al. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine, 14(4), 245-258.
38. Anda, R. F.; Felitti, V. J.; Bremner, J. D.; et al. (2006). The enduring effects of abuse and related adverse experiences in childhood: A convergence of evidence from neurobiology and epidemiology. European Archives of Psychiatry and Clinical Neuroscience, 256(3), 174-186.
39. Child and Adolescent Health Measurement Initiative (CAHMI). (2013). 2011-2012 NSCH: Child health indicator and subgroups SPSS codebook, version 1.0. Data Resource Center for Child and Adolescent Health, sponsored by the Maternal and Child Health Bureau. www.childhealthdata.org.
40. Bethell, C.; Reuland, C.; Schor, E.; et al. (2011). Rates of parent-centered developmental screening: Disparities and links to services access. Pediatrics, 128(1), 146-155.
41. Strickland, B. B.; van Dyck, P. C.; Kogan, M. D.; et al. (2011). Assessing and ensuring a comprehensive system of services for children with special health care needs: A public health approach. American Journal of Public Health, 101(2), 224-231.
42. Hodder, R. K.; Daly, J.; Freund, M.; et al. (2011). A school based resilience intervention to decrease tobacco, alcohol and marijuana use in high school students. BMC Public Health, 11, 722.
43. National Institute for Health Care Management Foundation. (2007). Reducing health disparities among children: Strategies and programs for health plans. Retrieved at http://nihcm.org/pdf/HealthDisparitiesFinal.pdf.
44. Shannon, K. E.; Beauchaine, T. P.; Brenner, S. L.; et al. (2007). Familial and temperamental predictors of resilience in children at risk for conduct disorder and depression. Development and Psychopathology, 19(3), 701-727.
45. Karatoreos, I. N.; McEwen, B. S. (2013). Annual research review: The neurobiology and physiology of resilience and adaptation across the life course. Journal of Child Psychology and Psychiatry, 54(4), 337-347.
46. Leonhardt, D. (2013, July 22). In climbing income ladder location matters. New York Times. Accessed on July 25, 2013, at http://www.nytimes.com/ 2013/07/22/business/in-climbing-income-ladder-location-matters.html?smid= fb-nytimes&WT.z-sma=US-ICI-2013072248.
47. Starfield, B. (2013). Perspective: Refocusing the system. New England Journal of Medicine, 359, 20.
48. Patient Protection and Affordable Care Act, Pub. L. No. 111-148 [S]10307]. (2010). Retrieved at http://www.gpo.gov/fdsys/pkg/PLAW-111publ148/ pdf/PLAW-111publ148.pdf.
49. Agency for Healthcare Research and Quality Innovations Exchange. (2013). Statewide partnership supports quality improvement in pediatric practices. June 5, 2013. Access July 13, 2013, at http://www.innovations.ahrq.gov/content.aspx? id=3799.