Skip to main content

Political Concerns in Transitioning Medical Care

  • Chapter
  • First Online:
Transitioning Medical Care
  • 177 Accesses

Abstract

As more children with long-term congenital conditions survive into adulthood, the need for successful transition of care from pediatric providers to adult care providers becomes more important. This chapter considers how laws, rules, and regulations of medical specialties, hospital systems and governments affect this transition. The effect of governmental support programs on this process are reviewed. The differences that exist between countries like the United States (where health care is primarily supported by private insurance and government sponsored programs) alongside countries like Canada and the United Kingdom, which have a more socialized health insurance policy, are examined. The impact on access to healthcare, of cultural issues and differences that exist in adolescents and emerging adults across the world are also assessed. Finally, some of the differences in the ranges of services provided in different countries and organizations that have played a role in supporting patients and families with congenital conditions across the world are considered.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 39.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 54.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Gleeson H, Turner G. Transition to adult services. Arch Dis Child Educ Pract Ed. 2012;97(3):86–92.

    Article  Google Scholar 

  2. US Census Bureau. US Census [Internet]. 2010. www.census.gov.

  3. Brault MW. Americans with disabilities: 2010: Household economic studies: US Department of Commerce. Economics and Statistics Administration; 2012.

    Google Scholar 

  4. Inouye BM, Wang H-H, Jiang R, Tejwani R, Wiener JS, Purves JT, et al. Estimating the economic impact of spina bifida in the United States. J Pediatr Rehabil Med. 2017;10:S61.

    Article  Google Scholar 

  5. Centers for Medicaid and Medicare Services. Medicaid General Information. 2017. https://www.medicaid.gov/index.html. Accessed 8 June 2018.

  6. Total Medicaid Spending. 2016. http://kff.org/medicaid/state-indicator/total-medicaid-spending/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D. Accessed 8 Jun 2018.

  7. Medicaid and Children with Special Health Care Needs. 2017. http://kff.org/medicaid/issue-brief/medicaid-and-children-with-special-health-care-needs/. Accessed 8 Jun 2018.

  8. Public Law. Law 111–148—Patient Protection and Affordable Care Act of 2010. Congressional Record; 2012.

    Google Scholar 

  9. States SCOTU. National Federation of Independent Business v. Sebelius 11-393. Nov 6, 2012.

    Google Scholar 

  10. Circuit USCOAFTDOC. United States House of Representatives v. Price 16-5202. 2017 July 17.

    Google Scholar 

  11. US Congress. HR 1628–American Health Care Act of 2017.

    Google Scholar 

  12. US Congress. S. Amdt. 270—Better Care Reconciliation Act of 2017. Accessed 25 Jul 2017.

    Google Scholar 

  13. US Congress. S. Amdt. 271—Obamacare Repeal Reconciliation Act of 2017. Accessed 25 Jul 2017.

    Google Scholar 

  14. US Congress. S. Amdt. 267—Health Care Freedom Act of 2017. Accessed 27 Jul 2017.

    Google Scholar 

  15. Durkin ET, Zurakowski D, Rangel SJ, Lillehei CW, Fishman LN. Passing the baton: the pediatric surgical perspective on transition. J Pediatr Surg. 2015;50(7):1196–200.

    Article  Google Scholar 

  16. Szymanski KM, Misseri R, Whittam B, Large T, Cain MP. Current opinions regarding care of the mature pediatric urology patient. J Pediatr Urol. 2015;11(5):251.e1–4.

    Article  CAS  Google Scholar 

  17. Woodhouse CRJ, Neild GH, Yu RN, Bauer S. Adult care of children from pediatric urology. J Urol. 2012;187(4):1164–71.

    Article  Google Scholar 

  18. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics. 2002;110(6 Pt 2):1304–6.

    Google Scholar 

  19. Vijayan T, Benin AL, Wagner K, Romano S, Andiman WA. We never thought this would happen: transitioning care of adolescents with perinatally acquired HIV infection from pediatrics to internal medicine. AIDS Care. 2009;21(10):1222–9.

    Article  Google Scholar 

  20. Duke NN, Scal PB. Adult care transitioning for adolescents with special health care needs: a pivotal role for family centered care. Matern Child Health J. 2011;15(1):98–105.

    Article  Google Scholar 

  21. Wiener LS, Kohrt B-A, Battles HB, Pao M. The HIV experience: youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol. 2011;36(2):141–54.

    Article  Google Scholar 

  22. LaRosa C, Glah C, Baluarte HJ, Meyers KEC. Solid-organ transplantation in childhood: transitioning to adult health care. Pediatrics. 2011;127(4):742–53.

    Article  Google Scholar 

  23. Garvey KC, Markowitz JT, Laffel LMB. Transition to adult care for youth with type 1 diabetes. Curr Diab Rep. 2012;12(5):533–41.

    Article  Google Scholar 

  24. Kaufmann Rauen K, Sawin KJ, Bartelt T, Waring WP, Orr M, Corey O’Connor R. Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program. Rehabil Nurs. 2013;38(2):63–72.

    Article  Google Scholar 

  25. Chira P, Ronis T, Ardoin S, White P. Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada. J Rheumatol. 2014;41(4):768–79.

    Article  Google Scholar 

  26. Cheak-Zamora NC, Farmer JE, Mayfield WA, Clark MJ, Marvin AR, Law JK, et al. Health care transition services for youth with autism spectrum disorders. Rehabil Psychol. 2014;59(3):340–8.

    Article  Google Scholar 

  27. Kasinskas K, Colomb-Lippa D. Congenital heart disease: transitioning from pediatric to adult cardiology care. JAAPA. 2014;27(8):32–4.

    Article  Google Scholar 

  28. Bemrich-Stolz CJ, Halanych JH, Howard TH, Hilliard LM, Lebensburger JD. Exploring adult care experiences and barriers to transition in adult patients with sickle cell disease. Int J Hematol Ther. 2015;1(1):1–6.

    Article  Google Scholar 

  29. McManus M, Molteni R. Coding and reimbursement tip sheet for transition from pediatric to adult health care. PRACTICE. 2015.

    Google Scholar 

  30. Kelleher K, Deans KJ, Chisolm DJ. Federal policy supporting improvements in transitioning from pediatric to adult surgery services. Semin Pediatr Surg. 2015;24(2):61–4.

    Article  Google Scholar 

  31. Gooding HC, Rodday AM, Wong JB, Gillman MW, Lloyd-Jones DM, Leslie LK, et al. Application of pediatric and adult guidelines for treatment of lipid levels among US adolescents transitioning to young adulthood. JAMA Pediatr. 2015;169(6):569–74.

    Article  Google Scholar 

  32. Public Law. Canada Health Act. 1984. pp. 1–18.

    Google Scholar 

  33. Organization for Economic Co-operation and Development. Health Expenditure [Internet]. http://www.oecd.org/els/health-systems/health-expenditure.htm. Accessed 8 Jun 2018.

  34. Kaufman M. Transition to adult care for youth with special health care needs. Review date: 2007-Nov (Reviewed 2012-Jan); 2007.

    Google Scholar 

  35. Department of Health. Department of Health corporate plan 2013–2014 [Internet]. https://www.gov.uk/government/publications/department-of-health-corporate-plan-2013-14/department-of-health-2013-14-corporate-plan#resources. Accessed 8 Jun 2018.

  36. National Service Framework for Children, Young People and Maternity Services. Transition: getting it right for young people. London; 2006.

    Google Scholar 

  37. Foster C. CHIVA guidance on transition for adolescents living with HIV. 2010.

    Google Scholar 

  38. Hall CL, Newell K, Taylor J, Sayal K, Hollis C. Services for young people with attention deficit/hyperactivity disorder transitioning from child to adult mental health services: a national survey of mental health trusts in England. J Psychopharmacol (Oxford). 2015;29(1):39–42.

    Article  Google Scholar 

  39. Shalaby MS, Gibson A, Granitsiotis P, Conn G, Cascio S. Assessment of the introduction of an adolescent transition urology clinic using a validated questionnaire. J Pediatr Urol. 2015;11(2):89.e1–5.

    Article  Google Scholar 

  40. Veit FC, Sanci LA, Young DY, Bowes G. Adolescent health care: perspectives of Victorian general practitioners. Med J Aust. 1995;163(1):16–8.

    Article  CAS  Google Scholar 

  41. Britnell M. In search of the perfect Health system. London: Palgrave; 2015. p. 1.

    Google Scholar 

  42. Australian Government Department of Health. Annual Medicare Statistics [Internet]. www.health.gov.au/internet/main/publishing.nsf/content/annual-medicare-statistics. Accessed 8 Feb 2018.

  43. Commonwealth of Australia. Statement 6: expenses and net capital investment [Internet]. 2018:1–53. http://www.budget.gov.au/2017-18/content/bp1/download/bp1_bs6.pdf. Accessed 8 Feb 2018.

  44. Holmes-Walker DJ, Llewellyn AC, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years. Diabet Med. 2007;24(7):764–9.

    Article  CAS  Google Scholar 

  45. Upadhyay V. Transitioning of paediatric patients with complex congenital gentirourinary conditions: study of current status in New Zealand and recommendations for the future. 2011.

    Google Scholar 

  46. Arnett JJ, Eisenberg N. Introduction to the special section: emerging adulthood around the world. Child Dev Perspect. 2007;1(2):66–7.

    Article  Google Scholar 

  47. Smith K, Freeman KA, Neville-Jan A, Mizokawa S, Adams E. Cultural considerations in the care of children with spina bifida. Pediatr Clin N Am. 2010;57(4):1027–40.

    Article  Google Scholar 

  48. Institute of Medicine US Committee on Disability in America, Field MJ, Jette AM. The future of disability in America. Washington (DC): National Academies Press (US); 2007.

    Google Scholar 

  49. McDonagh JE. Growing up ready for emerging adulthood. An evidence base for professionals involved in transitional care for young people with chronic illness and/or disabilities. 2006. https://councilfordisabledchildren.org.uk/sites/default/files/uploads/documents/import/growing-up-ready-for-emerging-adulthood.pdf. Accessed 8 Jun 2018.

  50. Resnick MD, Bearman PS, Blum RW, Bauman KE, Harris KM, Jones J, et al. Protecting adolescents from harm. Findings from the National Longitudinal Study on Adolescent Health. J Am Med Assoc. 1997;278(10):823–32.

    Article  CAS  Google Scholar 

  51. Werner EE. Vulnerable but invincible: high-risk children from birth to adulthood. Acta Paediatr Suppl. 1997;422:103–5.

    Article  CAS  Google Scholar 

  52. Shaw KL, Southwood TR, McDonagh JE. Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis. Arthritis Rheum. 2006;55(2):189–98.

    Article  CAS  Google Scholar 

  53. Thorin E, Yovanoff P, Irvin L. Dilemmas faced by families during their young adults’ transitions to adulthood: a brief report. Ment Retard. 1996;34(2):117–28.

    CAS  PubMed  Google Scholar 

  54. Smith JM. Foster care children with disabilities. J Health Soc Policy. 2002;16(1–2):81–92.

    Article  Google Scholar 

  55. English A, Morreale MC, Larsen J. Access to health care for youth leaving foster care: Medicaid and SCHIP. J Adolesc Health. 2003;32(6 Suppl):53–69.

    Article  Google Scholar 

  56. English A, Stinnett AJ, Dunn-Georgiou E. Health care for adolescents and young adults leaving foster care: policy options for improving access. Center for Adolescent Health & the Law; 2006.

    Google Scholar 

  57. Reilly T. Transition from care: status and outcomes of youth who age out of foster care. Child Welfare. 2003;82(6):727–46.

    PubMed  Google Scholar 

  58. CPPP Center for Public Policy Priorities. All grown up, nowhere to go: teens in Foster Care Transition. CPPP, Texas Foster Care Transitions Project. 2001. pp. 1–56.

    Google Scholar 

  59. Hall JG. The role of patient advocacy/parent support groups. S Afr Med J. 2013;103(12 Suppl 1):1020–2.

    Article  Google Scholar 

  60. Chad DA, Bidichandani S, Bruijn L, Capra JD, Dickie B, Ferguson J, et al. Funding agencies and disease organizations: resources and recommendations to facilitate ALS clinical research. Amyotroph Lateral Scler Frontotemporal Degener. 2013;14(Suppl 1):62–6.

    Article  Google Scholar 

  61. Groft SC. Rare diseases research: expanding collaborative translational research opportunities. Chest. 2013;144(1):16–23.

    Article  Google Scholar 

  62. Dunkle M, Pines W, Saltonstall PL. Advocacy groups and their role in rare diseases research. Adv Exp Med Biol. 2010;686(Chapter 28):515–25.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Joshua D. Roth .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Roth, J.D., Misseri, R. (2019). Political Concerns in Transitioning Medical Care. In: Wood, D., Williams, A., Koyle, M., Baird, A. (eds) Transitioning Medical Care. Springer, Cham. https://doi.org/10.1007/978-3-030-05895-1_12

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-05895-1_12

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-05893-7

  • Online ISBN: 978-3-030-05895-1

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics