Defining Successful Transition: Pediatric Provider Perspective

  • Cynthia Fair
  • Sophie Rupp
  • Laura C. Hart
  • Ana Catalina Alvarez-Elias
  • Martha Perry
  • Maria Ferris
Chapter

Abstract

Adolescents and young adults with special health-care needs often interface with both primary care providers and specialists. It is important for all pediatric providers to communicate during the transition to adult-oriented health care in order to promote optimal patient health outcomes. This chapter explores the unique perspectives each provider offers and suggests strategies to attain a successful health-care transition.

Keywords

Health-care transition Adolescents and young adults with special health-care needs Primary care provider Pediatric specialist 

References

  1. 1.
    Oswald DP, Gilles DL, Cannady MS, Wenzel DB, Willis JH, Bodurtha JN. Youth with special health care needs: transition to adult health care services. Matern Child Health J. 2013;17(10):1744–52.  https://doi.org/10.1007/s10995-012-1192-7.PubMedPubMedCentralCrossRefGoogle Scholar
  2. 2.
    Cooley WC, Sagerman PJ, American College of Physicians, Transitions Clinical Report Authoring Group. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200.  https://doi.org/10.1542/peds.2011-0969.PubMedCrossRefGoogle Scholar
  3. 3.
    Sable C, Foster E, Uzark K, Bjornsen K, Canobbio MM, Connolly HM, et al. Best practices in managing transition to adulthood for adolescents with congenital heart disease: the transition process and medical and psychosocial issues. Circulation. 2011;123(13):1454–85.  https://doi.org/10.1161/CIR.0b013e3182107c56.PubMedCrossRefGoogle Scholar
  4. 4.
    Jalkut MK, Allen PJ. Transition from pediatric to adult health care for adolescents with congenital heart disease: a review of the literature and clinical implications. Pediatr Nurs. 2009;35(6):381–7.PubMedGoogle Scholar
  5. 5.
    Sawyer SM, Macnee S. Transition to adult health care for adolescents with spina bifida: research issues. Dev Disabil Res Rev. 2010;16(1):60–5.  https://doi.org/10.1002/ddrr.98/. PubMedCrossRefGoogle Scholar
  6. 6.
    Fredericks EM, Dore-Stites D, Well A, Magee JC, Freed GL, Shieck V, et al. Assessment of transition readiness skills and adherence in pediatric liver transplant recipients. Pediatr Transplant. 2010;14(8):944–53.  https://doi.org/10.1111/j.1399-3046.2010.01349.x.PubMedPubMedCentralCrossRefGoogle Scholar
  7. 7.
    Pai A, Ingerski L, Perazzo L, Ramey C, Bonner M, Goebel J. Preparing for transition? The allocation of oral medication regimen tasks in adolescents with renal transplants. Pediatr Transplant. 2011;15(1):9–16.  https://doi.org/10.1111/j.1399-3046.2010.01369.x.PubMedCrossRefGoogle Scholar
  8. 8.
    Fair C, Cuttance J, Sharma N, Maslow G, Wiener L, Betz C, et al. International and interdisciplinary identification of health care transition outcomes. JAMA Pediatr. 2016;170(3):205–11.  https://doi.org/10.1001/jamapediatrics.2015.3168.PubMedPubMedCentralCrossRefGoogle Scholar
  9. 9.
    Suris JC, Akre C. Key elements for, and indicators of, a successful transition: an international Delphi study. J Adolesc Health. 2015;56(6):612–8.  https://doi.org/10.1016/j.jadohealth.2015.02.007.PubMedPubMedCentralCrossRefGoogle Scholar
  10. 10.
    Olsson CA, Bond L, Johnson MW, Forer DL, Boyce MF, Sawyer SM. Adolescent chronic illness: a qualitative study of psychosocial adjustment. Ann Acad Med Singap. 2003;32(1):43–50.PubMedGoogle Scholar
  11. 11.
    Rapley P, Davidson P. Enough of the problem: a review of time for health care transition solutions for young adults with a chronic illness. J Clin Nurs. 2010;19(3–4):313–23.  https://doi.org/10.1111/j.1365-2702.2009.03027.x.PubMedCrossRefGoogle Scholar
  12. 12.
    Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115(1):112–20.  https://doi.org/10.1542/peds.2004-1321.PubMedCrossRefGoogle Scholar
  13. 13.
    American Academy of Pediatrics, Clinical Report. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200.CrossRefGoogle Scholar
  14. 14.
    Burke R, Spoerri M, Price A, Cardosi A, Flanagan P. Survey of primary care pediatricians on the transition and transfer of adolescents to adult health care. Clin Pediatr (Phila). 2008;47(4):347–54.CrossRefGoogle Scholar
  15. 15.
    Fair CD, Sullivan K, Gatto A. Best practices in transitioning youth with HIV: perspectives of pediatric and adult infectious disease care providers. Psychol Health Med. 2010;15(5):515–27.  https://doi.org/10.1080/13548506.2010.493944.PubMedCrossRefGoogle Scholar
  16. 16.
    Paine CW, Stollon NB, Lucas MS, Brumley LD, Poole ES, Peyton T, et al. Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers. Inflamm Bowel Dis. 2014;20(11):2083.  https://doi.org/10.1097/MIB.0000000000000136.PubMedPubMedCentralCrossRefGoogle Scholar
  17. 17.
    Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics. 2005;115(6):1562–8.  https://doi.org/10.1542/peds.2004-1262.PubMedPubMedCentralCrossRefGoogle Scholar
  18. 18.
    Betz CL, Ferris ME, Woodward JF, Okumura MJ, Jan S, Wood DL. The health care transition research consortium health care transition model: a framework for research and practice. J Pediatr Rehabil Med. 2014;7(1):3–15.  https://doi.org/10.3233/PRM-140277. PubMedPubMedCentralCrossRefGoogle Scholar
  19. 19.
    Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. J Adolesc Health. 2012;51(3):213–9.  https://doi.org/10.1016/j.jadohealth.2012.01.007.PubMedPubMedCentralCrossRefGoogle Scholar
  20. 20.
    Fair CD, Sullivan K, Gatto A. Indicators of transition success for youth living with HIV: perspectives of pediatric and adult infectious disease care providers. AIDS Care. 2011;23(8):965–70.  https://doi.org/10.1080/09540121.2010.542449.PubMedCrossRefGoogle Scholar
  21. 21.
    Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. J Pediatr Psychol. 2009;36(2):160–71.  https://doi.org/10.1093/jpepsy/jsp128.PubMedPubMedCentralCrossRefGoogle Scholar
  22. 22.
    Cantú-Quintanilla G, Ferris M, Otero A, Gutiérrez-Almaraz A, Valverde-Rosas S, Velázquez-Jones L, et al. Validation of the UNC TR x ANSITION scale™ version 3 among Mexican adolescents with chronic kidney disease. J Pediatr Nurs. 2015;30(5):e71–81.  https://doi.org/10.1016/j.pedn.2015.06.011.PubMedCrossRefGoogle Scholar
  23. 23.
    Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, et al. A clinical tool to measure the components of health-care transition from pediatric care to adult care: the UNC TRxANSITION scale. Ren Fail. 2012;34(6):744–53.CrossRefGoogle Scholar
  24. 24.
    Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, Bickford K, Cantu G, Medeiros M, Phillips A, Ferris MT, Hooper SR. Self-management and transition-readiness assessment: development, reliability, and factor structure of the STARx questionnaire. J Pediatr Nurs. 2015;30(5):691–699. pii: S0882-5963(15)00153-0.  https://doi.org/10.1016/j.pedn.2015.05.009.PubMedCrossRefGoogle Scholar
  25. 25.
    Cohen SE, Hooper SR, Javalkar K, Haberman C, Fenton N, Lai H, Mahan JD, Massengill S, Kelly M, Cantú G, Medeiros M. Self-management and transition readiness assessment: concurrent, predictive and discriminant validation of the STAR x questionnaire. J Pediatr Nurs. 2015;30(5):668–76.  https://doi.org/10.1016/j.pedn.2015.05.006.PubMedCrossRefGoogle Scholar
  26. 26.
    Wood DL, Sawicki GS, Miller MD, Smotherman C, Lukens-Bull K, Livingood WC, et al. The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014;14(4):415–22.  https://doi.org/10.1016/j.acap.2014.03.008.CrossRefGoogle Scholar
  27. 27.
    Rehm RS, Fuentes-Afflick E, Fisher LT, Chesla CA. Parent and youth priorities during the transition to adulthood for youth with special health care needs and developmental disability. ANS Adv Nurs Sci. 2012;35(3):E57.  https://doi.org/10.1097/ANS.0b013e3182626180.PubMedPubMedCentralCrossRefGoogle Scholar
  28. 28.
    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.  https://doi.org/10.1037/a0036725.PubMedCrossRefGoogle Scholar
  29. 29.
    van Staa A, van der Stege HA, Jedeloo S, Moll HA, Hilberink SR. Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolesc Health. 2011;48(3):295–302.  https://doi.org/10.1016/j.jadohealth.2010.07.009.PubMedCrossRefGoogle Scholar
  30. 30.
    Soanes C, Timmons S. Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care. J Child Health Care. 2004;8(2):102–12.  https://doi.org/10.1177/1367493504041868.PubMedCrossRefGoogle Scholar
  31. 31.
    Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics. 2009;123(2):417–23.  https://doi.org/10.1542/peds.2008-0740.PubMedPubMedCentralCrossRefGoogle Scholar
  32. 32.
    Goldenring JM, Cohen E. Getting into adolescents’ heads. Contemp Pediatr. 1988;5:75–90.Google Scholar
  33. 33.
    Scal P. Improving health care transition services: just grow up, will you please. JAMA Pediatr. 2016;170(3):197–9.  https://doi.org/10.1001/jamapediatrics.2015.3268. PubMedCrossRefGoogle Scholar
  34. 34.
    Taddeo D, Egedy M, Frappier JY. Adherence to treatment in adolescents. Paediatr Child Health. 2008;13(1):19–24.  https://doi.org/10.1093/pch/13.1.19.PubMedPubMedCentralCrossRefGoogle Scholar
  35. 35.
    Kipps S, Bahu T, Ong K, Ackland FM, Brown RS, Fox CT, et al. Current methods of transfer of young people with type 1 diabetes to adult services. Diabet Med. 2002;19(8):649–54.  https://doi.org/10.1046/j.1464-5491.2002.00757.x.PubMedPubMedCentralCrossRefGoogle Scholar
  36. 36.
    Richardson LP, McCauley E, Grossman DC, McCarty CA, Richards J, Russo JE, Rockhill C, Katon W. Evaluation of the patient health Questionnaire-9 item for detecting major depression among adolescents. Pediatrics. 2010;126(6):1117–23.  https://doi.org/10.1542/peds.2010-0852.PubMedPubMedCentralCrossRefGoogle Scholar
  37. 37.
    Hyams JS, Ferry GD, Mandel FS, Gryboski JD, Kibort PM, Kirschner BS, et al. Development and validation of a pediatric Crohn’s disease activity index. J Pediatr Gastroenterol Nutr. 1991;12(4):449.CrossRefGoogle Scholar
  38. 38.
    Consolaro A, Ruperto N, Bazso A, Pistorio A, Magni-Manzoni S, Filocamo G, Malattia C, Viola S, Martini A, Ravelli A, Paediatric Rheumatology International Trials Organisation. Development and validation of a composite disease activity score for juvenile idiopathic arthritis. Arthritis Rheum. 2009;61(5):658–66.  https://doi.org/10.1002/art.24516.PubMedCrossRefGoogle Scholar
  39. 39.
    Lugasi T, Achille M, Stevenson M. Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health. 2011;48(5):429–40.  https://doi.org/10.1016/j.jadohealth.2010.10.016.PubMedPubMedCentralCrossRefGoogle Scholar
  40. 40.
    Fair CD, Goldstein B, Dizney R. Congruence of transition perspectives between adolescents with perinatally-acquired HIV and their guardians: an exploratory qualitative study. J Pediatr Nurs. 2015;30(5):684–90.  https://doi.org/10.1016/j.pedn.2015.06.001.PubMedCrossRefGoogle Scholar
  41. 41.
    Schwartz LA, Daniel LC, Brumley LD, Barakat LP, Wesley KM, Tuchman LK. 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. J Pediatr Psychol. 2014;39(6):588–601.  https://doi.org/10.1093/jpepsy/jsu028.PubMedPubMedCentralCrossRefGoogle Scholar
  42. 42.
    Hagan JF, Shaw JS, Duncan PM. Bright futures: guidelines. 3rd ed. Elk Grove Village: American Academy of Pediatrics; 2007.Google Scholar
  43. 43.
    Katzenellenbogen R. HEADSS: the ‘Review of Systems’ for adolescents. Virtual Mentor. 2005;7(3):1–2.Google Scholar

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Cynthia Fair
    • 1
  • Sophie Rupp
    • 1
  • Laura C. Hart
    • 2
  • Ana Catalina Alvarez-Elias
    • 3
    • 4
  • Martha Perry
    • 5
  • Maria Ferris
    • 6
  1. 1.Department of Public Health StudiesElon UniversityElonUSA
  2. 2.Cecil G. Sheps Center for Health Services ResearchUniversity of North Carolina at Chapel HillChapel HillUSA
  3. 3.Hospital Infantil de Mexico Federico GomezUniversidad Nacional Autonoma de MexicoMexico CityMexico
  4. 4.Sick Kids, The Hospital for Sick ChildrenUniversity of TorontoTorontoCanada
  5. 5.General Pediatrics and Adolescent MedicineUniversity of North Carolina at Chapel HillChapel HillUSA
  6. 6.Healthcare Transition ProgramUniversity of North Carolina at Chapel HillChapel HillUSA

Personalised recommendations