Medical Systems, Patient-Provider Relationships, and Transition of Care

  • Brandy A. Wicklow
  • Elizabeth A. C. SellersEmail author


Healthcare transition refers to the transition of care for youth with chronic disease from pediatric-oriented healthcare services to adult-oriented services. The primary goal of transition is to ensure that the move to adult healthcare services occurs seamlessly, resulting in continuity of care in a comprehensive, developmentally appropriate manner. Type 1 and type 2 diabetes are chronic illnesses significantly impacted by transition from pediatric to adult care. Successful transition requires a focused and purposeful process to optimize lifelong outcomes. This chapter aims to review aspects of transition of youth with both type 1 and type 2 diabetes to adult healthcare services. This includes models of transition care; patient, provider, and program characteristics; and the assessment of a patient’s transition readiness. In addition, we will address gaps in our understanding of this process and future needs to best support the population of adolescents and emerging adults with type 1 and type 2 diabetes.


Healthcare transition Emerging adult Adolescent Type 1 diabetes Type 2 diabetes 


  1. Allen, D., Channon, S., Lowes, L., Atwell, C., & Lane, C. (2011). Behind the scenes: The changing roles of parents in the transition from child to adult diabetes service. Diabetic Medicine, 28(8), 994–1000. Scholar
  2. Allen, D., Cohen, D., Hood, K., Robling, M., Atwell, C., Lane, C., … Gregory, J. (2012). Continuity of care in the transition from child to adult diabetes services: A realistic evaluation study. Journal of Health Services Research & Policy, 17(3), 140–148. Scholar
  3. Anderson, B. J., Edelstein, S., Abramson, N. W., Katz, L. E., Yasuda, P. M., Lavietes, S. J., … Marcus, M. D. (2011). Depressive symptoms and quality of life in adolescents with type 2 diabetes: Baseline data from the TODAY study. Diabetes Care, 34(10), 2205–2207. Scholar
  4. Annunziato, R. A., Parkar, S., Dugan, C. A., Barsade, S., Arnon, R., Miloh, T., … Shemesh, E. (2011). Brief report: Deficits in health care management skills among adolescent and young adult liver transplant recipients transitioning to adult care settings. Journal of Pediatric Psychology, 36(2), 155–159. Scholar
  5. Arnett, J. J. (2000). Emerging adulthood. A theory of development from the late teens through the twenties. The American Psychologist, 55(5), 469–480.CrossRefGoogle Scholar
  6. Beal, S. J., Riddle, I. K., Kichler, J. C., Duncan, A., Houchen, A., Casnellie, L., … Corathers, S. D. (2016). The associations of chronic condition type and individual characteristics with transition readiness. Academic Pediatrics, 16(7), 660–667. Scholar
  7. Betz, C. L. (2000). California healthy and ready to work transition health care guide: Developmental guidelines for teaching health care self-care skills to children. Issues in Comprehensive Pediatric Nursing, 23(4), 203–244.CrossRefGoogle Scholar
  8. Betz, C. L. (2004). Transition of adolescents with special health care needs: Review and analysis of the literature. Issues in Comprehensive Pediatric Nursing, 27(3), 179–241. Scholar
  9. Betz, C. L. (2008). Health care transitions of youth with special health care needs: The never ending journey. Communicating Nursing Research, 41, 13–29.PubMedGoogle Scholar
  10. Blum, R. W. (2002). Introduction. Improving transition for adolescents with special health care needs from pediatric to adult-centered health care. Pediatrics, 110(6 Pt 2), 1301–1303.PubMedGoogle Scholar
  11. Cadario, F., Prodam, F., Bellone, S., Trada, M., Binotti, M., Trada, M., … Aimaretti, G. (2009). Transition process of patients with type 1 diabetes (T1DM) from paediatric to the adult health care service: A hospital-based approach. Clinical Endocrinology, 71(3), 346–350. Scholar
  12. Callahan, S. T., & Cooper, W. O. (2010). Changes in ambulatory health care use during the transition to young adulthood. The Journal of Adolescent Health, 46(5), 407–413. Scholar
  13. Campbell, F., Biggs, K., Aldiss, S. K., O’Neill, P. M., Clowes, M., McDonagh, J., … Gibson, F. (2016). Transition of care for adolescents from paediatric services to adult health services. Cochrane Database of Systematic Reviews, 4, Cd009794. Scholar
  14. Cohen, S. E., Hooper, S. R., Javalkar, K., Haberman, C., Fenton, N., Lai, H., … Ferris, M. (2015). Self-management and transition readiness assessment: Concurrent, predictive and discriminant validation of the STARx questionnaire. Journal of Pediatric Nursing, 30(5), 668–676. Scholar
  15. Copeland, K. C., Zeitler, P., Geffner, M., Guandalini, C., Higgins, J., Hirst, K., … Willi, S. (2011). Characteristics of adolescents and youth with recent-onset type 2 diabetes: The TODAY cohort at baseline. The Journal of Clinical Endocrinology and Metabolism, 96(1), 159–167. Scholar
  16. Croom, A., Wiebe, D. J., Berg, C. A., Lindsay, R., Donaldson, D., Foster, C., … Swinyard, M. T. (2011). Adolescent and parent perceptions of patient-centered communication while managing type 1 diabetes. Journal of Pediatric Psychology, 36(2), 206–215. Scholar
  17. Dabelea, D., Mayer-Davis, E. J., Saydah, S., Imperatore, G., Linder, B., Divers, J., … Hamman, R. F. (2014). Prevalence of type 1 and type 2 diabetes among children and adolescents from 2001 to 2009. JAMA, 311(17), 1778–1786. Scholar
  18. Dart, A. B., Martens, P. J., Rigatto, C., Brownell, M. D., Dean, H. J., & Sellers, E. A. (2014). Earlier onset of complications in youth with type 2 diabetes. Diabetes Care, 37(2), 436–443. Scholar
  19. Dart, A. B., Sellers, E. A., Martens, P. J., Rigatto, C., Brownell, M. D., & Dean, H. J. (2012). High burden of kidney disease in youth-onset type 2 diabetes. Diabetes Care, 35(6), 1265–1271. Scholar
  20. Delamater, A. M., de Wit, M., McDarby, V., Malik, J., & Acerini, C. L. (2014). ISPAD Clinical Practice Consensus Guidelines 2014. Psychological care of children and adolescents with type 1 diabetes. Pediatric Diabetes, 15(Suppl 20), 232–244. Scholar
  21. Fenton, N., Ferris, M., Ko, Z., Javalkar, K., & Hooper, S. R. (2015). The relationship of health care transition readiness to disease-related characteristics, psychosocial factors, and health care outcomes: Preliminary findings in adolescents with chronic kidney disease. Journal of Pediatric Rehabilitation Medicine, 8(1), 13–22. Scholar
  22. Ferris, M. E., Harward, D. H., Bickford, K., Layton, J. B., Ferris, M. T., Hogan, S. L., … Hooper, S. R. (2012). A clinical tool to measure the components of health-care transition from pediatric care to adult care: The UNC TR(x)ANSITION scale. Renal Failure, 34(6), 744–753. Scholar
  23. Garvey, K. C., Beste, M. G., Luff, D., Atakov-Castillo, A., Wolpert, H. A., & Ritholz, M. D. (2014). Experiences of health care transition voiced by young adults with type 1 diabetes: A qualitative study. Adolescent Health, Medicine and Therapeutics, 5, 191–198. Scholar
  24. Garvey, K. C., Wolpert, H. A., Rhodes, E. T., Laffel, L. M., Kleinman, K., Beste, M. G., … Finkelstein, J. A. (2012). Health care transition in patients with type 1 diabetes: Young adult experiences and relationship to glycemic control. Diabetes Care, 35(8), 1716–1722. Scholar
  25. Hilliard, M. E., Perlus, J. G., Clark, L. M., Haynie, D. L., Plotnick, L. P., Guttmann-Bauman, I., & Iannotti, R. J. (2014). Perspectives from before and after the pediatric to adult care transition: A mixed-methods study in type 1 diabetes. Diabetes Care, 37(2), 346–354. Scholar
  26. Holmes-Walker, D. J., Llewellyn, A. C., & Farrell, K. (2007). A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years. Diabetic Medicine, 24(7), 764–769. Scholar
  27. Huang, J. S., Terrones, L., Tompane, T., Dillon, L., Pian, M., Gottschalk, M., … Bartholomew, L. K. (2014). Preparing adolescents with chronic disease for transition to adult care: A technology program. Pediatrics, 133(6), e1639–e1646. Scholar
  28. MacDonald C, D. H., (2014). Maestro Project Annual Report.Google Scholar
  29. Mortensen, H. B., Robertson, K. J., Aanstoot, H. J., Danne, T., Holl, R. W., Hougaard, P., … Aman, J. (1998). Insulin management and metabolic control of type 1 diabetes mellitus in childhood and adolescence in 18 countries. Hvidore Study Group on Childhood Diabetes. Diabetic Medicine, 15(9), 752–759.<752::aid-dia678>;2-wCrossRefPubMedGoogle Scholar
  30. Moynihan, M., Saewyc, E., Whitehouse, S., Paone, M., & McPherson, G. (2015). Assessing readiness for transition from paediatric to adult health care: Revision and psychometric evaluation of the Am I ON TRAC for Adult Care questionnaire. Journal of Advanced Nursing, 71(6), 1324–1335. Scholar
  31. Nazareth, M., Richards, J., Javalkar, K., Haberman, C., Zhong, Y., Rak, E., … van Tilburg, M. A. (2016). Relating health locus of control to health care use, adherence, and transition readiness among youths with chronic conditions, North Carolina, 2015. Preventing Chronic Disease, 13, E93. Scholar
  32. Neu, A., Losch-Binder, M., Ehehalt, S., Schweizer, R., Hub, R., & Serra, E. (2010). Follow-up of adolescents with diabetes after transition from paediatric to adult care: Results of a 10-year prospective study. Experimental and Clinical Endocrinology & Diabetes, 118(6), 353–355. Scholar
  33. Northam, E. A., Lin, A., Finch, S., Werther, G. A., & Cameron, F. J. (2010). Psychosocial well-being and functional outcomes in youth with type 1 diabetes 12 years after disease onset. Diabetes Care, 33(7), 1430–1437. Scholar
  34. Oxford English Dictionary Online (2016).
  35. Paone, M. C., Wigle, M., & Saewyc, E. (2006). The ON TRAC model for transitional care of adolescents. Progress in Transplantation, 16(4), 291–302.CrossRefGoogle Scholar
  36. Park, M. J., Paul Mulye, T., Adams, S. H., Brindis, C. D., & Irwin, C. E., Jr. (2006). The health status of young adults in the United States. The Journal of Adolescent Health, 39(3), 305–317. Scholar
  37. Patterson, C. C., Dahlquist, G. G., Gyurus, E., Green, A., & Soltesz, G. (2009). Incidence trends for childhood type 1 diabetes in Europe during 1989–2003 and predicted new cases 2005-20: A multicentre prospective registration study. Lancet, 373(9680), 2027–2033. Scholar
  38. Peters, A., & Laffel, L. (2011). Diabetes care for emerging adults: Recommendations for transition from pediatric to adult diabetes care systems: A position statement of the American Diabetes Association, with representation by the American College of Osteopathic Family Physicians, the American Academy of Pediatrics, the American Association of Clinical Endocrinologists, the American Osteopathic Association, the Centers for Disease Control and Prevention, Children with Diabetes, the Endocrine Society, the International Society for Pediatric and Adolescent Diabetes, Juvenile Diabetes Research Foundation International, the National Diabetes Education Program, and the Pediatric Endocrine Society (formerly Lawson Wilkins Pediatric Endocrine Society). Diabetes Care, 34(11), 2477–2485. Scholar
  39. Pierce, J. S., & Wysocki, T. (2015). Topical review: Advancing research on the transition to adult care for type 1 diabetes. Journal of Pediatric Psychology, 40(10), 1041–1047. Scholar
  40. Polfuss, M., Babler, E., Bush, L. L., & Sawin, K. (2015). Family perspectives of components of a diabetes transition program. Journal of Pediatric Nursing, 30(5), 748–756. Scholar
  41. Quinn, S. M., Ambrosino, J. M., Doyle, E. A., Weyman, K., Tamborlane, W. V., & Jastreboff, A. M. (2016). Utility of psychological screening of young adults with type 1 diabetes transitioning to adult providers. Endocrine Practice, 22(9), 1104–1110. Scholar
  42. Raymond, J. K., Duke, D. C., Shimomaeda, L., & Harris, M. A. (2013). Looking forward to transition: Perspectives on transition from pediatric to adult diabetes care. Diabetes Manag (Lond), 3(4). Scholar
  43. Reynolds, K. A., & Helgeson, V. S. (2011). Children with diabetes compared to peers: Depressed? Distressed? A meta-analytic review. Annals of Behavioral Medicine, 42(1), 29–41. Scholar
  44. Sawicki, G. S., Garvey, K. C., Toomey, S. L., Williams, K. A., Chen, Y., Hargraves, J. L., … Finkelstein, J. A. (2015). Development and validation of the adolescent assessment of preparation for transition: A novel patient experience measure. The Journal of Adolescent Health, 57(3), 282–287. Scholar
  45. Sawicki, G. S., Whitworth, R., Gunn, L., Butterfield, R., Lukens-Bull, K., & Wood, D. (2011). Receipt of health care transition counseling in the national survey of adult transition and health. Pediatrics, 128(3), e521–e529. Scholar
  46. Schmidt, S., Herrmann-Garitz, C., Bomba, F., & Thyen, U. (2016). A multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adults. Patient Education and Counseling, 99(3), 421–428. Scholar
  47. Schwartz, L. A., Brumley, L. D., Tuchman, L. K., Barakat, L. P., Hobbie, W. L., Ginsberg, J. P., … Deatrick, J. A. (2013). Stakeholder validation of a model of readiness for transition to adult care. JAMA Pediatrics, 167(10), 939–946. Scholar
  48. Schwartz, L. A., Daniel, L. C., Brumley, L. D., Barakat, L. P., Wesley, K. M., & Tuchman, L. K. (2014). Measures of readiness to transition to adult health care for youth with chronic physical health conditions: A systematic review and recommendations for measurement testing and development. Journal of Pediatric Psychology, 39(6), 588–601. Scholar
  49. Schwartz, L. A., Tuchman, L. K., Hobbie, W. L., & Ginsberg, J. P. (2011). A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child: Care, Health and Development, 37(6), 883–895. Scholar
  50. Sellers, E. A. C., Wicklow, B. A., & Dean, H. J. (2012). Clinical and demographic characteristics of type 2 diabetes in youth at diagnosis in Manitoba and Northwestern Ontario (2006–2011). Canadian Journal of Diabetes, 36(3), 114–118. Scholar
  51. Sequeira, P. A., Pyatak, E. A., Weigensberg, M. J., Vigen, C. P., Wood, J. R., Ruelas, V., … Peters, A. L. (2015). Let’s Empower and Prepare (LEAP): Evaluation of a structured transition program for young adults with type 1 diabetes. Diabetes Care, 38(8), 1412–1419. Scholar
  52. Silverstein, J., Cheng, P., Ruedy, K. J., Kollman, C., Beck, R. W., Klingensmith, G. J., … Tamborlane, W. V. (2015). Depressive symptoms in youth with type 1 or type 2 diabetes: Results of the pediatric diabetes consortium screening assessment of depression in diabetes study. Diabetes Care, 38(12), 2341–2343. Scholar
  53. Singh, S. P., Anderson, B., Liabo, K., & Ganeshamoorthy, T. (2016). Supporting young people in their transition to adults’ services: Summary of NICE guidance. BMJ, 353, i2225. Scholar
  54. Spaic, T., Mahon, J. L., Hramiak, I., Byers, N., Evans, K., Robinson, T., … Clarson, C. L. (2013). Multicentre randomized controlled trial of structured transition on diabetes care management compared to standard diabetes care in adolescents and young adults with type 1 diabetes (transition trial). BMC Pediatrics, 13, 163. Scholar
  55. Sparud-Lundin, C., Ohrn, I., & Danielson, E. (2010). Redefining relationships and identity in young adults with type 1 diabetes. Journal of Advanced Nursing, 66(1), 128–138. Scholar
  56. Steinbeck, K. S., Shrewsbury, V. A., Harvey, V., Mikler, K., Donaghue, K. C., Craig, M. E., & Woodhead, H. J. (2015). A pilot randomized controlled trial of a post-discharge program to support emerging adults with type 1 diabetes mellitus transition from pediatric to adult care. Pediatric Diabetes, 16(8), 634–639. Scholar
  57. van Dam, H. A., van der Horst, F., van den Borne, B., Ryckman, R., & Crebolder, H. (2003). Provider-patient interaction in diabetes care: Effects on patient self-care and outcomes. A systematic review. Patient Education Counselling, 51(1), 17–28.CrossRefGoogle Scholar
  58. van Staa, A., & Sattoe, J. N. (2014). Young adults’ experiences and satisfaction with the transfer of care. The Journal of Adolescent Health, 55(6), 796–803. Scholar
  59. van Staa, A., van der Stege, H. A., Jedeloo, S., Moll, H. A., & Hilberink, S. R. (2011). Readiness to transfer to adult care of adolescents with chronic conditions: Exploration of associated factors. The Journal of Adolescent Health, 48(3), 295–302. Scholar
  60. Van Walleghem, N., Macdonald, C. A., & Dean, H. J. (2008). Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care, 31(8), 1529–1530. Scholar
  61. Van Walleghem, N., MacDonald, C. A., & Dean, H. J. (2012). Transition of care for young adults with type 1 and 2 diabetes. Pediatric Annals, 41(5), e16–e20. Scholar
  62. While, A., Forbes, A., Ullman, R., Lewis, S., Mathes, L., & Griffiths, P. (2004). Good practices that address continuity during transition from child to adult care: Synthesis of the evidence. Child: Care, Health and Development, 30(5), 439–452. Scholar
  63. Williams, R. G. (2009). Fumbling the handoff: Managing the transition to adult care for adolescents with chronic conditions. The Journal of Adolescent Health, 44(4), 307–308. Scholar
  64. Wood, D. L., Sawicki, G. S., Miller, M. D., Smotherman, C., Lukens-Bull, K., Livingood, W. C., … Kraemer, D. F. (2014). The Transition Readiness Assessment Questionnaire (TRAQ): Its factor structure, reliability, and validity. Academic Pediatrics, 14(4), 415–422. Scholar
  65. Wood, J. R., Miller, K. M., Maahs, D. M., Beck, R. W., DiMeglio, L. A., Libman, I. M., … Woerner, S. E. (2013). Most youth with type 1 diabetes in the T1D exchange clinic registry do not meet American Diabetes Association or International Society for Pediatric and Adolescent Diabetes clinical guidelines. Diabetes Care, 36(7), 2035–2037. Scholar

Copyright information

© Springer Nature Switzerland AG 2020

Authors and Affiliations

  • Brandy A. Wicklow
    • 1
    • 2
  • Elizabeth A. C. Sellers
    • 1
    • 2
    Email author
  1. 1.Pediatrics and Child Health, Max Rady College of Medicine, Rady Faculty of Health SciencesUniversity of ManitobaWinnipegCanada
  2. 2.Children’s Hospital Research Institute of ManitobaWinnipegCanada

Personalised recommendations