Introduction: Historical Perspectives, Current Priorities, and Healthcare Transition Processes, Evidence, and Measurement

  • Patience H. White
  • Margaret A. McManus


Transitions are an essential component of life, and the transition from pediatric to adult health-care systems/model of care is the central focus of this introductory chapter. This chapter gives a brief historical and current policy perspective, outlines the status of chronic condition prevalence and the transition preparation among youth and young adults, and summarizes current health-care transition processes, evidence, and measurement considerations.


Transition to adult care Adolescents Youth with special health-care needs Young adults Quality improvement Evidence 


  1. 1.
    Magrab PR, Millar HEC, editors. Surgeon General’s conference: growing up and getting medical care: youth with special health care needs. Jekyll Island, GA: Office of the Surgeon General; 1989.Google Scholar
  2. 2.
    McPherson M, Weissman G, Strickland BB, van Dyck PC, Blumberg SJ, Newacheck PW. Implementing community-based systems of services for children and youths with special health care needs: how well are we doing? Pediatrics. 2004;113:1538–44.PubMedGoogle Scholar
  3. 3.
    Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14:570–6.PubMedCrossRefGoogle Scholar
  4. 4.
    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;110:1304–6.Google Scholar
  5. 5. Disability and Health. Accessed 29 Jun 2017.
  6. 6.
    Lu MC, Lauver CB, Dykton C, Kogan MD, Lawler MH, Raskin-Ramos L, et al. Transformation of the title V maternal and child health services block grant. Matern Child Health J. 2015;19:927–31.PubMedPubMedCentralCrossRefGoogle Scholar
  7. 7.
    McManus M, Beck D. Transition to adult health care and state title V program directions: a review of 2017 block grant applications. Washington, DC: Got Transition; 2017.Google Scholar
  8. 8.
    Got Transition. Got Transition Home Page. Accessed 29 Jun 2017.
  9. 9.
    Substance Abuse and Mental Health Services Administration (SAMHSA). Healthy Transitions Grant Information. Accessed 29 Jun 2017.
  10. 10.
    Centers for Medicare & Medicaid Services. Health Homes for Enrollees with Chronic Conditions. Accessed 29 Jun 2017.
  11. 11.
    National Committee for Quality Assurance (NCQA). NCQA PMCH Standards and Guidelines. Accessed 29 Jun 2017.
  12. 12.
    American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group, Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128:182–200.CrossRefGoogle Scholar
  13. 13.
    Got Transition. Six Core Elements of Health Care Transition. Accessed 29 Jun 2017.
  14. 14.
    Data Resource Center for Child & Adolescent Health. How Many Children in the United States Have Special Health Needs. Accessed 29 Jun 2017.
  15. 15.
    Brault MW. Americans with disabilities: 2010. Accessed 29 Jun 2017.
  16. 16.
    Institute of Medicine and National Research Council of the National Academies. Investing in the health and well-being of young adults. Washington, DC: The National Academies Press; 2014.Google Scholar
  17. 17.
    Society for Adolescent Health Medicine (SAHM). Young adult health and well-being: a position statement of the Society for Adolescent Health and Medicine. J Adolesc Health. 2017;60:758–9.CrossRefGoogle Scholar
  18. 18.
    Spencer D, McManus M, Thiede Call K, Turner J, Harwood C, White P. Health care coverage and access among children, adolescents, and young adults, 2012–2015: implications for future health reforms. J Adolesc Health. In press.Google Scholar
  19. 19.
    McManus MA, Pollack LR, Cooley WC, McAllister JW, Lotstein D, Strickland B, et al. Current status of transition preparation among youth with special needs in the United States. Pediatrics. 2013;131:1090–7.PubMedCrossRefGoogle Scholar
  20. 20.
    U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. Frequently asked questions: 2016 National Survey of Children’s Health. Accessed 8 Jan 2018.
  21. 21.
    Sawicki GS, Whitworth R, Gunn L, Butterfield R, Lukens-Bull K, Wood D. Receipt of health care transition counseling in the National Survey of adult transition and health. Pediatrics. 2011;128:e521–9.PubMedGoogle Scholar
  22. 22.
    Bregnballe V, Boisen KA, Schiotz PO, Pressler T, Lomborg K. Flying the Nest: a challenge for young adults with cystic fibrosis and their parents. Patient Prefer Adherence. 2017;11:229–36.PubMedPubMedCentralCrossRefGoogle Scholar
  23. 23.
    Heath G, Farre A, Shaw K. Parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents’ experiences. Patient Educ Couns. 2017;100:76–92.PubMedCrossRefGoogle Scholar
  24. 24.
    Rutishauser C, Sawyer SM, Ambresin AE. Transition of young people with chronic conditions: a cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care. Eur J Pediatr. 2014;173:1067–74.PubMedCrossRefGoogle Scholar
  25. 25.
    White P, McManus M, Alblan M, et al. Adult Physician Perspectives on Transition from Pediatric to Adult Health Care. Poster presented at the 16th Annual Chronic Illness and Disability Conference, Houston, TX, October 1–2, 2015.Google Scholar
  26. 26.
    Garvey KC, Wolpert HA, Rhodes ET, Laffel LM, Kleinman K, Beste MG, et al. Health care transition in patients with type 1 diabetes: young adult experiences and relationship to glycemic control. Diabetes Care. 2012;35:1716–22.PubMedPubMedCentralCrossRefGoogle Scholar
  27. 27.
    Nehring WM, Betz CL, Lobo ML. Uncharted territory: systematic review of providers’ roles, understanding, and views pertaining to health care transition. J Pediatr Nurs. 2015;30:732–47.PubMedPubMedCentralCrossRefGoogle Scholar
  28. 28.
    Okumura MJ, Kerr EA, Cabana MD, Davis MM, Demonner S, Heisler M. Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics. 2010;125:e748–54.PubMedPubMedCentralCrossRefGoogle Scholar
  29. 29.
    Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics. 2009;123:417–23.PubMedPubMedCentralCrossRefGoogle Scholar
  30. 30.
    Szalda DE, Jimenez ME, Long JE, Ni A, Shea JA, Jan S. Healthcare system supports for young adult patients with pediatric onset chronic conditions: a qualitative study. J Pediatr Nurs. 2015;30:126–32.PubMedCrossRefGoogle Scholar
  31. 31.
    Telfair J, Alexander LR, Loosier PS, Alleman-Velez PL, Simmons J. Providers’ perspectives and beliefs regarding transition to adult Care for Adolescents with sickle cell disease. J Health Care Poor Underserved. 2004;15:443–61.PubMedCrossRefGoogle Scholar
  32. 32.
    White P, Cuomo C, Johnson-Hooper T, et al. Adult Provider Willingness to Accept Young Adults into Their Practice: Results from Three Integrated Delivery Systems. Poster presented at the 17th Annual Chronic Illness and Disability Conference, Houston, TX, October 27–28, 2016.Google Scholar
  33. 33.
    Logan J, Peralta E, Brown K, Moffett M, Advani A, Leech N. Smoothing the transition from paediatric to adult services in Type 1 diabetes. J Diabetes Nurs. 2008;12:328–38.Google Scholar
  34. 34.
    Cadario F, Prodam F, Bellone S, Trada M, Binotti M, Trada M, et al. Transition process of patients with type 1 diabetes (T1dm) from Paediatric to the adult health care service: a hospital-based approach. Clin Endocrinol. 2009;71:346–50.CrossRefGoogle Scholar
  35. 35.
    Chaudhry SR, Keaton M, Nasr SZ. Evaluation of a cystic fibrosis transition program from pediatric to adult care. Pediatr Pulmonol. 2013;48:658–65.PubMedCrossRefGoogle Scholar
  36. 36.
    Maslow G, Adams C, Willis M, Neukirch J, Herts K, Froehlich W, et al. An evaluation of a positive youth development program for adolescents with chronic illness. J Adolesc Health. 2013;52:179–85.PubMedCrossRefGoogle Scholar
  37. 37.
    Annunziato RA, Baisley MC, Arrato N, Barton C, Henderling F, Arnon R, et al. Strangers headed to a strange land? A pilot study of using a transition coordinator to improve transfer from pediatric to adult services. J Pediatr. 2013;163:1628–33.PubMedCrossRefGoogle Scholar
  38. 38.
    Wojciechowski EA, Hurtig A, Dorn L. A natural history study of adolescents and young adults with sickle cell disease as they transfer to adult care: a need for case management services. J Pediatr Nurs. 2002;17:18–27.PubMedCrossRefGoogle Scholar
  39. 39.
    McDonagh JE, Southwood TR, Shaw KL, British Society of P, Adolescent R. The impact of a coordinated transitional care Programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford). 2007;46:161–8.CrossRefGoogle Scholar
  40. 40.
    Gilmer TP, Ojeda VD, Fawley-King K, Larson B, Garcia P. Change in mental health service use after offering youth-specific versus adult programs to transition-age youths. Psychiatr Serv. 2012;63:592–6.PubMedCrossRefGoogle Scholar
  41. 41.
    Robertson LP, McDonagh JE, Southwood TR, Shaw KL, British Society of Paediatric Adolescent Rheumatology. Growing up and moving on: a multicentre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from paediatric to adult centred care. Ann Rheum Dis. 2006;65:74–80.PubMedCrossRefGoogle Scholar
  42. 42.
    Wafa S, Nakhla M. Improving the transition from pediatric to adult diabetes healthcare: a literature review. Can J Diabetes. 2015;39:520–8.PubMedCrossRefGoogle Scholar
  43. 43.
    Wiener LS, Kohrt BA, Battles HB, Pao M. The HIV experience: youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol. 2011;36:141–54.PubMedCrossRefGoogle Scholar
  44. 44.
    Majumdar S. The adolescent with sickle cell disease. Adolesc Med State Art Rev. 2013;24:295–306, xv.PubMedGoogle Scholar
  45. 45.
    Lochridge J, Wolff J, Oliva M, O’Sullivan-Oliveira J. Perceptions of solid organ transplant recipients regarding self-care management and transitioning. Pediatr Nurs. 2013;39:81–9.Google Scholar
  46. 46.
    McManus M, White P, Barbour A, Downing B, Hawkins K, Quion N, et al. Pediatric to adult transition: a quality improvement model for primary care. J Adolesc Health. 2015;56:73–8.PubMedPubMedCentralCrossRefGoogle Scholar
  47. 47.
  48. 48.
    McManus M, White P, Pirtle R, Hancock C, Ablan M, Corona-Parra R. Incorporating the six Core elements of health care transition into a Medicaid managed care plan: lessons learned from a pilot project. J Pediatr Nurs. 2015;30:700–13.CrossRefGoogle Scholar
  49. 49.
    Jones MR, Robbins BW, Augustine M, Doyle J, Mack-Fogg J, Jones H, et al. Transfer from pediatric to adult endocrinology. Endocr Pract. 2017;23(7):822–30.CrossRefGoogle Scholar
  50. 50.
    Hickam T, White P, et al. Implementing a nationally recognized pediatric-to-adult transitional care approach in a major children’s hospital. Health Soc Work. 2018.
  51. 51.
    White P, Cooley WC, McAllister JW. Starting a transition improvement process using the six Core elements of health care transition. Washington, DC: Got Transition; 2015.Google Scholar
  52. 52.
    Harwood C, McManus M, White P. Incorporating pediatric-to-adult transition into NCQA patient-centered medical home recognition. Washington, DC: Got Transition; 2017.Google Scholar
  53. 53.
    White P, Caskin A, Aramburu MG, Harwood C, McManus P. Adapting the Six Core Elements of Health Care Transition for Use in a School-Based Health Clinic and School Health Education. Poster presented at the 18th Annual Chronic Illness and Disability Conference, Houston, TX, October 4–6, 2017.Google Scholar
  54. 54.
    Volertas SD, Rossi-Foulkes R. Using quality improvement in resident education to improve transition care. Pediatr Ann. 2017;46:e203–6.PubMedCrossRefGoogle Scholar
  55. 55.
    Gabriel P, McManus M, Rogers K, White P. Outcome evidence for structured pediatric to adult health care transition interventions: a systemic review. J Peds. 2017;188:263–269.e15.CrossRefGoogle Scholar
  56. 56.
    Prior M, McManus M, White P, Davidson L. Measuring the “triple aim” in transition care: a systematic review. Pediatrics. 2014;134:e1648–61.PubMedCrossRefGoogle Scholar
  57. 57.
    Sawicki GS, Garvey KC, Toomey SL, Williams KA, Hargraves JL, James T, et al. Preparation for transition to adult care among Medicaid-insured adolescents. Pediatrics. 2017;140(1):e20162768.PubMedPubMedCentralCrossRefGoogle Scholar
  58. 58.
    Shaw KL, Southwood TR, McDonagh JE, British Society of P, Adolescent R. Development and preliminary validation of the ‘Mind the gap’ scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis. Child Care Health Dev. 2007;33:380–8.PubMedCrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Departments of Medicine and PediatricsGeorge Washington School of Medicine and Health SciencesWashington, DCUSA
  2. 2.Got TransitionWashington, DCUSA
  3. 3.The National Alliance to Advance Adolescent HealthWashington, DCUSA

Personalised recommendations