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Transition Care of Teens with Chronic Health Conditions

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Handbook of Outpatient Medicine

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Abstract

Transitioning from pediatric to adult healthcare can be a complicated process for adolescents and young adults (AYA) with chronic childhood-onset conditions. As children, these individuals are referred to as children or youth with “special healthcare needs” (CYSHCN). As individuals transition to adulthood, variations in terminology include “adolescents and young adults with special healthcare needs (AYASHCN),” “young adults with special healthcare needs (YASHCN),” or “emerging adults” with “chronic conditions.” Whereas family medicine and medicine-pediatric providers are likely to be familiar with transition, this process is an emerging focus for pediatric and adult primary care providers; approximately 20% of young adults have a chronic childhood-onset condition, and these numbers are rising. Primary care providers manage the overall healthcare and coordinate subspecialty services for this patient population in the context of their physical, mental, and social needs. In addressing barriers in the transition process, it is important to be aware of the perspectives of patients and families as well as the perspectives of pediatric and adult providers. Teens who transition to adult healthcare require specialized, focused considerations over a number of visits. Providers will successfully guide their young adult patients through transition by becoming familiar with unique considerations of the transition process as well as condition-specific medical knowledge.

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References

  1. Rosen DS, Blum RW, Britto M, Sawyer SM, Siegel DM. Transition to adult health care for adolescents and young adults with chronic conditions: position paper of the Society for Adolescent Medicine. J Adolesc Health. 2003;33(4):309–11.

    Article  Google Scholar 

  2. The National Alliance to Advance Adolescent Health. From prevalence data from the national health interview survey and the substance abuse and mental health services administration. http://www.thenationalalliance.org/.

  3. Kraus L, Lauer E, Coleman R, Houtenville A. 2017 disability statistics annual report. Durham: University of New Hampshire; 2018.

    Google Scholar 

  4. Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200.

    Article  Google Scholar 

  5. Gray WN, Resmini AR, Baker KD, Holbrook E, Morgan PJ, Ryan J, Hommel KA. Concerns, barriers, and recommendations to improve transition from pediatric to adult IBD care: perspectives of patients, parents, and health professionals. Inflamm Bowel Dis. 2015;21(7):1641–51.

    Article  Google Scholar 

  6. 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.

    Article  Google Scholar 

  7. Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics. 2005;115(1):112–20.

    Article  Google Scholar 

  8. Rosen P, Stenger E, Bochkoris M, Hannon MJ, Kwoh CK. Family-centered multidisciplinary rounds enhance the team approach in pediatrics. Pediatrics. 2009;123(4):e603–8.

    Article  Google Scholar 

  9. Westwood A, Langerak N, Fieggen G. Transition from child-to adult-orientated care for children with long-term health conditions: a process, not an event. S Afr Med J. 2014;104(4):310–3.

    Article  CAS  Google Scholar 

  10. Telfair J, Myers J, Drezner S. Transfer as a component of the transition of adolescents with sickle cell disease to adult care: adolescent, adult, and parent perspectives. J Adolesc Health. 1994;15(7):558–65.

    Article  CAS  Google Scholar 

  11. Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child. 1999;81(3):271–5.

    Article  CAS  Google Scholar 

  12. Schidlow DV, Fiel SB. Life beyond pediatrics. Transition of chronically ill adolescents from pediatric to adult health care systems. Med Clin North Am. 1990;74(5):1113–20.

    Article  CAS  Google Scholar 

  13. Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition from pediatric to adult care: internists’ perspectives. Pediatrics. 2009;123(2):417–23.

    Article  Google Scholar 

  14. Okumura MJ, Heisler M, Davis MM, Cabana MD, Demonner S, Kerr EA. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. J Gen Intern Med. 2008;23(10):1621–7.

    Article  Google Scholar 

  15. Wojciechowski E, Hurtig A, Dorn L. A natural history study of adolescent 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.

    Article  Google Scholar 

  16. Flume P, Anderson D, Hardy K, Grey S. Transition programs in cystic fibrosis centers: perceptions of pediatric and adult program directors. Pediatr Pulmonol. 2001;31:443–50.

    Article  CAS  Google Scholar 

  17. Pacaud D, McConnell B, Huot C, Aebi C, Yale J. Transition from pediatric care to adult care for insulin-dependent diabetes patients. Can J Diabetes Care. 1996;20:14–20.

    Google Scholar 

  18. GotTransition. Health care transition resources. 2017. http://gottransition.org/resources/.

  19. Reichard A, Turnbull HR III. Perspectives of physicians, families, and case managers concerning access to health care by individuals with developmental disabilities. Ment Retard. 2004;42(3):181–94.

    Article  Google Scholar 

  20. US Department of Health and Human Services. The developmental disabilities assistance and bill of rights act of 2000. 2000;6:2006.

    Google Scholar 

  21. Brault MW. Americans with disabilities: 2010. Current population reports. 2012:70–131.

    Google Scholar 

  22. Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil. 2011;32(2):419–36.

    Article  Google Scholar 

  23. McKenzie K, Milton M, Smith G, Ouellette-Kuntz H. Systematic review of the prevalence and incidence of intellectual disabilities: current trends and issues. Curr Dev Disord Rep. 2016;3:1–12.

    Article  Google Scholar 

  24. Thompson JR. Supports intensity scale: users manual. American Association on Mental Retardation. 2004.

    Google Scholar 

  25. Horowitz SH, Rawe J, Whittaker MC. The state of learning disabilities: understanding the 1 in 5. New York: National Center for Learning Disabilities; 2017.

    Google Scholar 

  26. Wagner M, Newman L, Cameto R, Garza N, Levine P. After high school: a first look at the postschool experiences of youth with disabilities. A report from the national longitudinal transition study-2 (NLTS2). Online Submission. 2005.

    Google Scholar 

  27. Quinn G. United Nations convention on the rights of persons with disabilities: toward a new international politics of disability. Tex JCL CR. 2009;15:33.

    Google Scholar 

  28. Pilapil M, DeLaet DE, Kuo AA, Peacock C, Sharma N, editors. Care of adults with chronic childhood conditions: a practical guide. Berlin: Springer; 2016.

    Google Scholar 

  29. Bull MJ. Health supervision for children with Down syndrome. Pediatrics. 2011;128(2):393–406.

    Article  Google Scholar 

  30. Book L, Hart A, Black J, Feolo M, Zone JJ, Neuhausen SL. Prevalence and clinical characteristics of celiac disease in downs syndrome in a US study. Am J Med Genet. 2001;98(1):70–4.

    Article  CAS  Google Scholar 

  31. McCandless SE. Health supervision for children with Prader-Willi syndrome. Pediatrics. 2011;127(1):195–204.

    Article  Google Scholar 

  32. Kerr M, Scheepers M, Arvio M, Beavis J, Brandt C, Brown S, Marson AG. Consensus guidelines into the management of epilepsy in adults with an intellectual disability. J Intellect Disabil Res. 2009;53(8):687–94.

    Article  CAS  Google Scholar 

  33. Nielsen J, Graff C, Kanters JK, Toft E, Taylor D, Meyer JM. Assessing QT interval prolongation and its associated risks with antipsychotics. CNS Drugs. 2011;25(6):473–90.

    Article  CAS  Google Scholar 

  34. Krahn GL, Hammond L, Turner A. A cascade of disparities: health and health care access for people with intellectual disabilities. Ment Retard Dev Disabil Res Rev. 2006;12(1):70–82.

    Article  Google Scholar 

  35. Barth S, Haas JP, Schlichtiger J, Molz J, Bisdorff B, Michels H, Radon K. Long-term health-related quality of life in German patients with juvenile idiopathic arthritis in comparison to German general population. PLoS One. 2016;11(4):e0153267.

    Article  Google Scholar 

  36. Sullivan WF, Berg JM, Bradley E, Cheetham T, Denton R, Heng J, Lunsky Y. Primary care of adults with developmental disabilities Canadian consensus guidelines. Can Fam Physician. 2011;57(5):541–53.

    Google Scholar 

  37. Reither EN, Hauser RM, Yang Y. Do birth cohorts matter? Age period-cohort analyses of the obesity epidemic in the United States. Soc Sci Med. 2009;69(10):1439–48.

    Article  Google Scholar 

  38. Blair E, Watson L, Badawi N, Stanley FJ. Life expectancy among people with cerebral palsy in western Australia. Dev Med Child Neurol. 2001;43(8):508.

    Article  CAS  Google Scholar 

  39. Ortega AN, Huertas SE, Canino G, Ramirez R, Rubio-Stipec M. Childhood asthma, chronic illness, and psychiatric disorders. J Nerv Ment Dis. 2002;190(5):275–81.

    Article  Google Scholar 

  40. Katon W, Lozano P, Russo J, McCauley E, Richardson L, Bush T. The prevalence of DSM-IV anxiety and depressive disorders in youth with asthma compared with controls. J Adolesc Health. 2007;41(5):455–63.

    Article  Google Scholar 

  41. Shakespeare T. Disabled sexuality: toward rights and recognition. Sex Disabil. 2000;18(3):159–66.

    Article  Google Scholar 

  42. Lee S, Lee-Ann F. Sexual well-being and physical disability. Br J Soc Work. 2016;46:2263–81.

    Article  Google Scholar 

  43. Cheng MM, Udry JR. Sexual behaviors of physically disabled adolescents in the United States. J Adolesc Health. 2002;31(1):48–58.

    Article  Google Scholar 

  44. Surís J-C, et al. Sexual behavior of adolescents with chronic disease and disability. J Adolesc Health. 1996;19(2):124–31.

    Article  Google Scholar 

  45. Murphy NA, Elias ER. Sexuality of children and adolescents with developmental disabilities. Pediatrics. 2006;118(1):398–403.

    Article  Google Scholar 

  46. Couwenhoven T. Sexuality education: building a foundation for healthy attitudes. Disabil Solutions. 2001;4(5):9–10.

    Google Scholar 

  47. Sirovich BE, Welch HG. The frequency of pap smear screening in the United States. J Gen Intern Med. 2004;19(3):243–50.

    Article  Google Scholar 

  48. Armour BS, Thierry JM, Wolf LA. State-level differences in breast and cervical cancer screening by disability status: United States, 2008. Womens Health Issues. 2009;19(6):406–14.

    Article  Google Scholar 

  49. Ervin DA, Williams A, Merrick J. Primary care: mental and behavioral health and persons with intellectual and developmental disabilities. Front Public Health. 2014;2:76.

    Google Scholar 

  50. Ervin DA, Hennen B, Merrick J, Morad M. Healthcare for persons with intellectual and developmental disability in the community. Front Public Health. 2014;2:83.

    Google Scholar 

  51. Amundson R. Quality of life, disability, and hedonic psychology. J Theory Soc Behav. 2010;40(4):374–92.

    Article  Google Scholar 

  52. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med. 1999;48(8):977–88.

    Article  CAS  Google Scholar 

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Author information

Authors and Affiliations

  1. Internal Medicine, Pediatrics Residency Program, The University of Chicago, Chicago, IL, USA

    Catherine Waymel

  2. Department of Medicine, The University of Chicago, Chicago, IL, USA

    Kamala Gullapalli Cotts

Authors
  1. Catherine Waymel
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  2. Kamala Gullapalli Cotts
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Correspondence to Catherine Waymel .

Editor information

Editors and Affiliations

  1. Department of Medicine, Albert Einstein College of Medicine, Jacobi Medical Center, Bronx, NY, USA

    Elana Sydney

  2. Department of Medicine, Albert Einstein College of Medicine, Jacobi Medical Center, Bronx, NY, USA

    Eleanor Weinstein

  3. Department of Medicine, Albert Einstein College of Medicine, Jacobi Medical Center, Bronx, NY, USA

    Lisa M. Rucker

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Waymel, C., Cotts, K.G. (2022). Transition Care of Teens with Chronic Health Conditions. In: Sydney, E., Weinstein, E., Rucker, L.M. (eds) Handbook of Outpatient Medicine. Springer, Cham. https://doi.org/10.1007/978-3-031-15353-2_3

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  • DOI: https://doi.org/10.1007/978-3-031-15353-2_3

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-15352-5

  • Online ISBN: 978-3-031-15353-2

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