Transitional Care in Endocrinology

  • Andrew A. Dwyer
  • Michael HauschildEmail author


Transition from pediatric to adult-oriented care is often characterized by a lack of coordination and discontinuity in care resulting in poor health outcomes as well as diminished psychosocial well-being and impaired quality of life. Most young adults seen in endocrine consultation have chronic, often rare diseases that require coordinated transitional care (TC). While endocrine TC is widely acknowledged as important, relatively few models have been formally evaluated. This review provides an overview of the relevance of TC in endocrinology, summarizes the needs of young adults and families for TC, and highlights the multidimensional considerations for TC. Particular attention is given to the role of nursing in endocrine TC. We report findings of a structured literature review identifying the current state of disease-specific TC in endocrinology for growth hormone deficiency, congenital hypothyroidism, congenital hypogonadotropic hypogonadism, Klinefelter syndrome, Turner syndrome, congenital adrenal hyperplasia, disorders/differences of sex development, and late effects. We show the results of a structured endocrine TC program with a dedicated transition nurse implemented at the University Hospital of Lausanne (Switzerland). Implications for practice, teaching, and research are discussed, and key advice and resources are highlighted.


Advanced practice nursing Kallmann syndrome Patient centered care Rare diseases Transition to adult care 


  1. Ahmed SF, Khwaja O, Hughes IA. The role of a clinical score in the assessment of ambiguous genitalia. BJU Int. 2000;85(1):120–4.PubMedCrossRefGoogle Scholar
  2. Ahmed SF, Achermann JC, Arlt W, Balen A, Conway G, Edwards Z, et al. Society for Endocrinology UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development (revised 2015). Clin Endocrinol. 2016;84(5):771–88.CrossRefGoogle Scholar
  3. Ahmid M, Perry CG, Ahmed SF, Shaikh MG. Growth hormone deficiency during young adulthood and the benefits of growth hormone replacement. Endocr Connect. 2016;5(3):R1–R11.PubMedPubMedCentralCrossRefGoogle Scholar
  4. Ahmid M, Ahmed SF, Shaikh MG. Childhood-onset growth hormone deficiency and the transition to adulthood: current perspective. Ther Clin Risk Manag. 2018;14:2283–91.PubMedPubMedCentralCrossRefGoogle Scholar
  5. Aksglaede L, Link K, Giwercman A, Jorgensen N, Skakkebaek NE, Juul A. 47,XXY Klinefelter syndrome: clinical characteristics and age-specific recommendations for medical management. Am J Med Genet C Semin Med Genet. 2013;163C(1):55–63.PubMedCrossRefGoogle Scholar
  6. Aleksander PE, Bruckner-Spieler M, Stoehr AM, Lankes E, Kuhnen P, Schnabel D, et al. Mean high-dose l-thyroxine treatment is efficient and safe to achieve a normal IQ in Young adult patients with congenital hypothyroidism. J Clin Endocrinol Metab. 2018;103(4):1459–69.PubMedCrossRefGoogle Scholar
  7. Almasri J, Zaiem F, Rodriguez-Gutierrez R, Tamhane SU, Iqbal AM, Prokop LJ, et al. Genital reconstructive surgery in females with congenital adrenal hyperplasia: a systematic review and meta-analysis. J Clin Endocrinol Metab. 2018;103(11):4089–96.PubMedCrossRefGoogle Scholar
  8. Arlt W, Krone N. Adult consequences of congenital adrenal hyperplasia. Horm Res. 2007;68(Suppl 5):158–64.PubMedGoogle Scholar
  9. Auchus RJ, Arlt W. Approach to the patient: the adult with congenital adrenal hyperplasia. J Clin Endocrinol Metab. 2013;98(7):2645–55.PubMedPubMedCentralCrossRefGoogle Scholar
  10. Auchus RJ, Quint EH. Adolescents with disorders of sex development (DSD)—lost in transition? Horm Metab Res. 2015;47(5):367–74.PubMedCrossRefGoogle Scholar
  11. Auchus RJ, Witchel SF, Leight KR, Aisenberg J, Azziz R, Bachega TA, et al. Guidelines for the development of comprehensive care centers for congenital adrenal hyperplasia: guidance from the CARES Foundation initiative. Int J Pediatr Endocrinol. 2010;2010:275213.PubMedCrossRefGoogle Scholar
  12. Audi L, Ahmed SF, Krone N, Cools M, McElreavey K, Holterhus PM, et al. GENETICS IN ENDOCRINOLOGY: approaches to molecular genetic diagnosis in the management of differences/disorders of sex development (DSD): position paper of EU COST action BM 1303 'DSDnet'. Eur J Endocrinol. 2018;179(4):R197–206.PubMedPubMedCentralCrossRefGoogle Scholar
  13. Aydogan U, Aydogdu A, Akbulut H, Sonmez A, Yuksel S, Basaran Y, et al. Increased frequency of anxiety, depression, quality of life and sexual life in young hypogonadotropic hypogonadal males and impacts of testosterone replacement therapy on these conditions. Endocr J. 2012;59(12):1099–105.PubMedCrossRefGoogle Scholar
  14. Bachelot A. Transition of care from childhood to adulthood: congenital adrenal hyperplasia. Endocr Dev. 2018;33:17–33.PubMedCrossRefGoogle Scholar
  15. Bachelot A, Vialon M, Baptiste A, Tejedor I, Elie C, Polak M, et al. Impact of transition on quality of life in patients with congenital adrenal hyperplasia diagnosed during childhood. Endocr Connect. 2017;6(7):422–9.PubMedPubMedCentralCrossRefGoogle Scholar
  16. Backeljauw PF, Bondy C, Chernausek SD, Cernich JT, Cole DA, Fasciano LP, et al. Proceedings from the turner resource network symposium: the crossroads of health care research and health care delivery. Am J Med Genet A. 2015;167A(9):1962–71.PubMedCrossRefGoogle Scholar
  17. Badawy SM, Kuhns LM. Economic evaluation of text-messaging and smartphone-based interventions to improve medication adherence in adolescents with chronic health conditions: a systematic review. JMIR Mhealth Uhealth. 2016;4(4):e121.PubMedPubMedCentralCrossRefGoogle Scholar
  18. Badawy SM, Barrera L, Sinno MG, Kaviany S, O'Dwyer LC, Kuhns LM. Text messaging and Mobile phone apps as interventions to improve adherence in adolescents with chronic health conditions: a systematic review. JMIR Mhealth Uhealth. 2017;5(5):e66.PubMedPubMedCentralCrossRefGoogle Scholar
  19. Bakula DM, Sharkey CM, Wolfe-Christensen C, Mullins AJ, Meyer J, Mullins LL, et al. Recommendations for the establishment of disorders/differences of sex development interdisciplinary care clinics for youth. J Pediatr Nurs. 2017;37:79–85.PubMedCrossRefGoogle Scholar
  20. Baum HBA. Clinical Excellence in Endocrinology. J Clin Endocrinol Metab. 2018; Scholar
  21. Beal SJ, Riddle IK, Kichler JC, Duncan A, Houchen A, Casnellie L, et al. The associations of chronic condition type and individual characteristics with transition readiness. Acad Pediatr. 2016;16(7):660–7.PubMedPubMedCentralCrossRefGoogle Scholar
  22. Bennecke E, Thyen U, Gruters A, Lux A, Kohler B. Health-related quality of life and psychological Well-being in adults with differences/disorders of sex development. Clin Endocrinol. 2017;86(4):634–43.CrossRefGoogle Scholar
  23. Berglund A, Johannsen TH, Stochholm K, Aksglaede L, Fedder J, Viuff MH, et al. Incidence, prevalence, diagnostic delay, morbidity, mortality and socioeconomic status in males with 46,XX disorders of sex development: a nationwide study. Hum Reprod. 2017;32(8):1751–60.PubMedCrossRefGoogle Scholar
  24. Berglund A, Johannsen TH, Stochholm K, Viuff MH, Fedder J, Main KM, et al. Morbidity, mortality, and socioeconomics in females with 46,XY disorders of sex development: a nationwide study. J Clin Endocrinol Metab. 2018;103(4):1418–28.PubMedCrossRefGoogle Scholar
  25. Bernard V, Donadille B, Zenaty D, Courtillot C, Salenave S. Brac de la Perriere a, et al. spontaneous fertility and pregnancy outcomes amongst 480 women with turner syndrome. Hum Reprod. 2016;31(4):782–8.PubMedCrossRefGoogle Scholar
  26. Betz CL. California healthy and ready to work transition health care guide: developmental guidelines for teaching health care self-care skills to children. Issues Compr Pediatr Nurs. 2000;23(4):203–44.PubMedCrossRefGoogle Scholar
  27. Betz CL. SPN position statement: transition of pediatric patients into adult care. J Pediatr Nurs. 2017;35:160–4.PubMedPubMedCentralCrossRefGoogle Scholar
  28. Betz CL, Smith KA, Van Speybroeck A, Hernandez FV, Jacobs RA. Movin' on up: an innovative nurse-led interdisciplinary health care transition program. J Pediatr Health Care. 2016;30(4):323–38.PubMedPubMedCentralCrossRefGoogle Scholar
  29. Boehm U, Bouloux PM, Dattani MT, de Roux N, Dode C, Dunkel L, et al. Expert consensus document: European consensus statement on congenital hypogonadotropic hypogonadism--pathogenesis, diagnosis and treatment. Nat Rev Endocrinol. 2015;11(9):547–64.PubMedCrossRefGoogle Scholar
  30. Bojesen A, Juul S, Gravholt CH. Prenatal and postnatal prevalence of Klinefelter syndrome: a national registry study. J Clin Endocrinol Metab. 2003;88(2):622–6.PubMedCrossRefGoogle Scholar
  31. Bongers-Schokking JJ, Resing WC, de Rijke YB, de Ridder MA, de Muinck Keizer-Schrama SM. Cognitive development in congenital hypothyroidism: is overtreatment a greater threat than undertreatment? J Clin Endocrinol Metab. 2013;98(11):4499–506.PubMedCrossRefGoogle Scholar
  32. Brain CE, Creighton SM, Mushtaq I, Carmichael PA, Barnicoat A, Honour JW, et al. Holistic management of DSD. Best Pract Res Clin Endocrinol Metab. 2010;24(2):335–54.PubMedPubMedCentralCrossRefGoogle Scholar
  33. Burns K, Farrell K, Myszka R, Park K, Holmes-Walker DJ. Access to a youth-specific service for young adults with type 1 diabetes mellitus is associated with decreased hospital length of stay for diabetic ketoacidosis. Intern Med J. 2018;48(4):396–402.PubMedPubMedCentralCrossRefGoogle Scholar
  34. Cabrera SM, DiMeglio LA, Eugster EA. Incidence and characteristics of pseudoprecocious puberty because of severe primary hypothyroidism. J Pediatr. 2013;162(3):637–9.PubMedCrossRefGoogle Scholar
  35. Campbell F, Biggs K, Aldiss SK, O'Neill PM, Clowes M, McDonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev. 2016;4:CD009794.PubMedGoogle Scholar
  36. Chapple A, May C, Campion P. Parental guilt: the part played by the clinical geneticist. J Genet Couns. 1995;4(3):179–91.PubMedCrossRefGoogle Scholar
  37. Chiang JL, Kirkman MS, Laffel LM, Peters AL. Type 1 diabetes sourcebook a. type 1 diabetes through the life span: a position statement of the American Diabetes Association. Diabetes Care. 2014;37(7):2034–54.PubMedPubMedCentralCrossRefGoogle Scholar
  38. Close S, Fennoy I, Smaldone A, Reame N. Phenotype and adverse quality of life in boys with Klinefelter syndrome. J Pediatr. 2015;167(3):650–7.PubMedPubMedCentralCrossRefGoogle Scholar
  39. Close S, Sadler L, Grey M. In the dark: challenges of caring for sons with Klinefelter syndrome. J Pediatr Nurs. 2016;31(1):11–20.PubMedCrossRefGoogle Scholar
  40. Cohen SE, Hooper SR, Javalkar K, Haberman C, Fenton N, Lai H, et al. Self-management and transition readiness assessment: concurrent, predictive and discriminant validation of the STARx questionnaire. J Pediatr Nurs. 2015;30(5):668–76.PubMedCrossRefGoogle Scholar
  41. Conway GS. Congenital adrenal hyperplasia: adolescence and transition. Horm Res. 2007;68(Suppl 5):155–7.PubMedGoogle Scholar
  42. Corona G, Pizzocaro A, Lanfranco F, Garolla A, Pelliccione F, Vignozzi L, et al. Sperm recovery and ICSI outcomes in Klinefelter syndrome: a systematic review and meta-analysis. Hum Reprod Update. 2017;23(3):265–75.PubMedCrossRefGoogle Scholar
  43. Coyne I, Prizeman G, Sheehan A, Malone H, While AE. An e-health intervention to support the transition of young people with long-term illnesses to adult healthcare services: design and early use. Patient Educ Couns. 2016;99(9):1496–504.CrossRefPubMedGoogle Scholar
  44. Crouch NS, Creighton SM. Transition of care for adolescents with disorders of sex development. Nat Rev Endocrinol. 2014;10(7):436–42.PubMedCrossRefGoogle Scholar
  45. Culen C, Ertl DA, Schubert K, Bartha-Doering L, Haeusler G. Care of girls and women with turner syndrome: beyond growth and hormones. Endocr Connect. 2017;6(4):R39–51.PubMedPubMedCentralCrossRefGoogle Scholar
  46. Davies K. Disorders of sex development-ambiguous genitalia. J Pediatr Nurs. 2016;31(4):463–6.PubMedCrossRefGoogle Scholar
  47. de Fine LS, Winther JF, Gudmundsdottir T, Holmqvist AS, Bonnesen TG, Asdahl PH, et al. Hospital contacts for endocrine disorders in adult life after childhood cancer in Scandinavia (ALiCCS): a population-based cohort study. Lancet. 2014;383(9933):1981–9.CrossRefGoogle Scholar
  48. de Fine LS, Rugbjerg K, Gudmundsdottir T, Bonnesen TG, Asdahl PH, Holmqvist AS, et al. Long-term inpatient disease burden in the adult life after childhood cancer in Scandinavia (ALiCCS) study: a cohort study of 21,297 childhood cancer survivors. PLoS Med. 2017;14(5):e1002296.CrossRefGoogle Scholar
  49. Deillon E, Hauschild M, Faouzi M, Stoppa-Vaucher S, Elowe-Gruau E, Dwyer A, et al. Natural history of growth hormone deficiency in a pediatric cohort. Horm Res Paediatr. 2015;83(4):252–61.PubMedCrossRefGoogle Scholar
  50. Devernay M, Ecosse E, Coste J, Carel JC. Determinants of medical care for young women with turner syndrome. J Clin Endocrinol Metab. 2009;94(9):3408–13.PubMedCrossRefGoogle Scholar
  51. Donabedian A. The quality of care. How can it be assessed? JAMA. 1988;260(12):1743–8.PubMedCrossRefGoogle Scholar
  52. Donabedian A. An introduction to quality Assurance in Health Care. Oxford, UK: Oxford University Press; 2003. 240 p.Google Scholar
  53. Donabedian A. Evaluating the quality of medical care. 1966. Milbank Q. 2005;83(4):691–729.PubMedPubMedCentralCrossRefGoogle Scholar
  54. Dunkel L, Quinton R. Transition in endocrinology: induction of puberty. Eur J Endocrinol. 2014;170(6):R229–39.PubMedCrossRefGoogle Scholar
  55. Dwyer AA, Pitteloud N. Transition of care from childhood to adulthood: congenital Hypogonadotropic Hypogonadism. Endocr Dev. 2018;33:82–98.PubMedCrossRefGoogle Scholar
  56. Dwyer AA, Quinton R. The metabolic syndrome in central hypogonadotrophic hypogonadism. Front Horm Res. 2018;49:156–69.PubMedCrossRefGoogle Scholar
  57. Dwyer AA, Quinton R, Morin D, Pitteloud N. Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support. Orphanet J Rare Dis. 2014;9:83.PubMedPubMedCentralCrossRefGoogle Scholar
  58. Dwyer AA, Quinton R, Pitteloud N, Morin D. Psychosexual development in men with congenital hypogonadotropic hypogonadism on long-term treatment: a mixed methods study. Sex Med. 2015a;3(1):32–41.PubMedCrossRefGoogle Scholar
  59. Dwyer AA, Phan-Hug F, Hauschild M, Elowe-Gruau E, Pitteloud N. TRANSITION IN Endocrinology: Hypogonadism in adolescence. Eur J Endocrinol 2015b;173(1):R15–R24.PubMedCrossRefGoogle Scholar
  60. Dwyer AA, Tiemensma J, Quinton R, Pitteloud N, Morin D. Adherence to treatment in men with hypogonadotrophic hypogonadism. Clin Endocrinol. 2017;86(3):377–83.CrossRefGoogle Scholar
  61. Dzemaili S, Tiemensma J, Quinton R, Pitteloud N, Morin D, Dwyer AA. Beyond hormone replacement: quality of life in women with congenital hypogonadotropic hypogonadism. Endocr Connect. 2017;6(6):404–12.PubMedPubMedCentralCrossRefGoogle Scholar
  62. Enam A, Torres-Bonilla J, Eriksson H. Evidence-based evaluation of eHealth interventions: systematic literature review. J Med Internet Res. 2018;20(11):e10971.PubMedPubMedCentralCrossRefGoogle Scholar
  63. Ertl DA, Gleiss A, Schubert K, Culen C, Hauck P, Ott J, et al. Health status, quality of life and medical care in adult women with turner syndrome. Endocr Connect. 2018;7(4):534–43.PubMedCrossRefGoogle Scholar
  64. Eshelman-Kent D, Kinahan KE, Hobbie W, Landier W, Teal S, Friedman D, et al. Cancer survivorship practices, services, and delivery: a report from the Children's oncology group (COG) nursing discipline, adolescent/young adult, and late effects committees. J Cancer Surviv. 2011;5(4):345–57.PubMedPubMedCentralCrossRefGoogle Scholar
  65. EURORDIS. The voice of rare disease patietns in Europe; 2018.
  66. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  67. 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 TR(x)ANSITION scale. Ren Fail. 2012;34(6):744–53.PubMedPubMedCentralCrossRefGoogle Scholar
  68. Fisher EB, Ballesteros J, Bhushan N, Coufal MM, Kowitt SD, McDonough AM, et al. Key features of peer support in chronic disease prevention and management. Health Aff (Millwood). 2015;34(9):1523–30.CrossRefGoogle Scholar
  69. Flannigan R, Patel P, Paduch DA. Klinefelter syndrome. The effects of early androgen therapy on competence and behavioral phenotype. Sex Med Rev. 2018;6(4):595–606.PubMedCrossRefGoogle Scholar
  70. Freriks K, Timmermans J, Beerendonk CC, Verhaak CM, Netea-Maier RT, Otten BJ, et al. Standardized multidisciplinary evaluation yields significant previously undiagnosed morbidity in adult women with turner syndrome. J Clin Endocrinol Metab. 2011;96(9):E1517–26.PubMedCrossRefGoogle Scholar
  71. Gawlik A, Malecka-Tendera E. Transitions in endocrinology: treatment of Turner's syndrome during transition. Eur J Endocrinol. 2014;170(2):R57–74.PubMedCrossRefGoogle Scholar
  72. Gawlik A, Kaczor B, Kaminska H, Zachurzok-Buczynska A, Gawlik T, Malecka-Tendera E. Quality of medical follow-up of young women with turner syndrome treated in one clinical center. Horm Res Paediatr. 2012;77(4):222–8.PubMedCrossRefGoogle Scholar
  73. Gebauer J, Higham C, Langer T, Denzer C, Brabant G. Long-term endocrine and metabolic consequences of cancer treatment: a systematic review. Endocr Rev. 2018;Google Scholar
  74. Gies I, Unuane D, Velkeniers B, De Schepper J. Management of Klinefelter syndrome during transition. Eur J Endocrinol. 2014;171(2):R67–77.PubMedCrossRefGoogle Scholar
  75. Gleeson H, Wisniewski AB. Working with adolescents and young adults to support transition. Endocr Dev. 2014;27:128–37.PubMedCrossRefGoogle Scholar
  76. Gleeson H, McCartney S, Lidstone V. Everybody's business': transition and the role of adult physicians. Clin Med (Lond). 2012;12(6):561–6.CrossRefGoogle Scholar
  77. Gleeson H, Davis J, Jones J, O'Shea E, Clayton PE. The challenge of delivering endocrine care and successful transition to adult services in adolescents with congenital adrenal hyperplasia: experience in a single Centre over 18 years. Clin Endocrinol. 2013;78(1):23–8.CrossRefGoogle Scholar
  78. Godbout A, Tejedor I, Malivoir S, Polak M, Touraine P. Transition from pediatric to adult healthcare: assessment of specific needs of patients with chronic endocrine conditions. Horm Res Paediatr. 2012;78(4):247–55.PubMedCrossRefGoogle Scholar
  79. Gomez-Lobo V, Oelschlager AA. North American Society for P, adolescent G. gynecological challenges in the diagnosis and care of patients with DSD: the role of the obstetrician gynecologist in the multidisciplinary approach to the patient. Am J Med Genet C Semin Med Genet. 2017;175(2):300–3.PubMedCrossRefGoogle Scholar
  80. Gravholt CH, Andersen NH, Conway GS, Dekkers OM, Geffner ME, Klein KO, et al. Clinical practice guidelines for the care of girls and women with turner syndrome: proceedings from the 2016 Cincinnati international turner syndrome meeting. Eur J Endocrinol. 2017;177(3):G1–G70.CrossRefPubMedGoogle Scholar
  81. Gray WN, Schaefer MR, Resmini-Rawlinson A, Wagoner ST. Barriers to transition from pediatric to adult care: a systematic review. J Pediatr Psychol. 2018;43(5):488–502.CrossRefPubMedGoogle Scholar
  82. Griffiths F, Bryce C, Cave J, Dritsaki M, Fraser J, Hamilton K, et al. Timely digital patient-clinician communication in specialist clinical Services for Young People: a mixed-methods study (the LYNC study). J Med Internet Res. 2017;19(4):e102.PubMedPubMedCentralCrossRefGoogle Scholar
  83. Groth KA, Skakkebaek A, Host C, Gravholt CH, Bojesen A. Clinical review: Klinefelter syndrome—a clinical update. J Clin Endocrinol Metab. 2013;98(1):20–30.PubMedCrossRefGoogle Scholar
  84. Gruters A, Krude H. Detection and treatment of congenital hypothyroidism. Nat Rev Endocrinol. 2011;8(2):104–13.PubMedCrossRefGoogle Scholar
  85. Ha Dinh TT, Bonner A, Clark R, Ramsbotham J, Hines S. The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review. JBI Database System Rev Implement Rep. 2016;14(1):210–47.PubMedCrossRefGoogle Scholar
  86. Habibi H, Emmanuel Y, Chung N. Process of transition for congenital heart patients. Clin Nurse Spec. 2017;31(6):329–34. Scholar
  87. Hanew K, Tanaka T, Horikawa R, Hasegawa T, Yokoya S. Prevalence of diverse complications and its association with karyotypes in Japanese adult women with turner syndrome-a questionnaire survey by the Foundation for Growth Science. Endocr J. 2018;65(5):509–19.PubMedCrossRefGoogle Scholar
  88. Hassani Y, Larroque B, Dos Santos S, Ecosse E, Bouyer J, Leger J. Fecundity in young adults treated early for congenital hypothyroidism is related to the initial severity of the disease: a longitudinal population-based cohort study. J Clin Endocrinol Metab. 2012;97(6):1897–904.PubMedCrossRefGoogle Scholar
  89. Haupt R, Essiaf S, Dellacasa C, Ronckers CM, Caruso S, Sugden E, et al. The 'Survivorship Passport' for childhood cancer survivors. Eur J Cancer. 2018;102:69–81.PubMedCrossRefGoogle Scholar
  90. Hauschild M, Elowe-Gruau E, Dwyer A, Aquarone MP, Unal S, Jornayvaz FR, et al. Transition in diabetology. Rev Med Suisse. 2015;11(462):450–2. 4–5Google Scholar
  91. Hausmann JS, Touloumtzis C, White MT, Colbert JA, Gooding HC. Adolescent and Young adult use of social Media for Health and its Implications. J Adolesc Health. 2017;60(6):714–9.PubMedPubMedCentralCrossRefGoogle Scholar
  92. Health NAtAA. Got Transitions; 2018.
  93. 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(1):76–92.CrossRefPubMedGoogle Scholar
  94. Herlihy AS, McLachlan RI, Gillam L, Cock ML, Collins V, Halliday JL. The psychosocial impact of Klinefelter syndrome and factors influencing quality of life. Genet Med. 2011;13(7):632–42.PubMedCrossRefGoogle Scholar
  95. Hertweck SP, Rothstein DH. Challenges and opportunities in adolescent gynecology patients with surgically-treated congenital and acquired anomalies: transition of care from pediatric to adult surgery. J Pediatr Adolesc Gynecol. 2019;32(2):103–9.PubMedCrossRefGoogle Scholar
  96. Hokken-Koelega A, van der Lely AJ, Hauffa B, Hausler G, Johannsson G, Maghnie M, et al. Bridging the gap: metabolic and endocrine care of patients during transition. Endocr Connect. 2016;5(6):R44–54.PubMedPubMedCentralCrossRefGoogle Scholar
  97. Howard AF, Kazanjian A, Pritchard S, Olson R, Hasan H, Newton K, et al. Healthcare system barriers to long-term follow-up for adult survivors of childhood cancer in British Columbia, Canada: a qualitative study. J Cancer Surviv. 2018;12(3):277–90.PubMedCrossRefGoogle Scholar
  98. Hudson MM, Hester A, Sweeney T, Kippenbrock S, Majcina R, Vear S, et al. A model of care for childhood cancer survivors that facilitates research. J Pediatr Oncol Nurs. 2004;21(3):170–4.PubMedCrossRefGoogle Scholar
  99. Hughes IA. Congenital adrenal hyperplasia: transitional care. Growth Hormon IGF Res. 2004;14(Suppl A):S60–6.CrossRefGoogle Scholar
  100. Hullmann SE, Chalmers LJ, Wisniewski AB. Transition from pediatric to adult care for adolescents and young adults with a disorder of sex development. J Pediatr Adolesc Gynecol. 2012;25(2):155–7.PubMedCrossRefGoogle Scholar
  101. Improvement IH. The breakthrough series: IHI's collaborative model for achieving breakthrough Improvement. Institute for Healthcare Improvement: Boston, MA; 2003.Google Scholar
  102. Junge N, Migal K, Goldschmidt I, Baumann U. Transition after pediatric liver transplantation - perceptions of adults, adolescents and parents. World J Gastroenterol. 2017;23(13):2365–75.PubMedPubMedCentralCrossRefGoogle Scholar
  103. Kennedy A, Sawyer S. Transition from pediatric to adult services: are we getting it right? Curr Opin Pediatr. 2008;20(4):403–9.PubMedCrossRefGoogle Scholar
  104. Kieffer V, Davies K, Gibson C, Middleton M, Munday J, Shalet S, et al. Society for Endocrinology competency framework for adult endocrine nursing: 2nd edition. Endocr Connect. 2015;4(1):W1–W17.PubMedPubMedCentralCrossRefGoogle Scholar
  105. Kirk J, Clayton P. Specialist services and transitional care in paediatric endocrinology in the UK and Ireland. Clin Endocrinol. 2006;65(1):59–63.CrossRefGoogle Scholar
  106. Klassen AF, Grant C, Barr R, Brill H. Kraus de Camargo O, Ronen GM, et al. development and validation of a generic scale for use in transition programmes to measure self-management skills in adolescents with chronic health conditions: the TRANSITION-Q. Child Care Health Dev. 2015a;41(4):547–58.PubMedPubMedCentralCrossRefGoogle Scholar
  107. Klassen AF, Rosenberg-Yunger ZR, D'Agostino NM, Cano SJ, Barr R, Syed I, et al. The development of scales to measure childhood cancer survivors' readiness for transition to long-term follow-up care as adults. Health Expect. 2015b;18(6):1941–55.PubMedPubMedCentralCrossRefGoogle Scholar
  108. Kosteria I, Kanaka-Gantenbein C. Turner syndrome: transition from childhood to adolescence. Metabolism. 2018;86:145–53.PubMedCrossRefGoogle Scholar
  109. Krall J, Libman I, Siminerio L. The emerging adult with diabetes: transitioning from pediatric to adult care. Pediatr Endocrinol Rev. 2017;14(Suppl 2):422–8.PubMedGoogle Scholar
  110. Kruse B, Riepe FG, Krone N, Bosinski HA, Kloehn S, Partsch CJ, et al. Congenital adrenal hyperplasia - how to improve the transition from adolescence to adult life. Exp Clin Endocrinol Diabetes. 2004;112(7):343–55.PubMedCrossRefGoogle Scholar
  111. Kyriakou A, Dessens A, Bryce J, Iotova V, Juul A, Krawczynski M, et al. Current models of care for disorders of sex development—results from an international survey of specialist centres. Orphanet J Rare Dis. 2016;11(1):155.PubMedPubMedCentralCrossRefGoogle Scholar
  112. Lagrou K, Xhrouet-Heinrichs D, Massa G, Vandeweghe M, Bourguignon JP, De Schepper J, et al. Quality of life and retrospective perception of the effect of growth hormone treatment in adult patients with childhood growth hormone deficiency. J Pediatr Endocrinol Metab. 2001;14(Suppl 5):1249–60. discussion 61–2Google Scholar
  113. Laitinen EM, Hero M, Vaaralahti K, Tommiska J, Raivio T. Bone mineral density, body composition and bone turnover in patients with congenital hypogonadotropic hypogonadism. Int J Androl. 2012;35(4):534–40.PubMedCrossRefGoogle Scholar
  114. Lasaite L, Ceponis J, Preiksa RT, Zilaitiene B. Impaired emotional state, quality of life and cognitive functions in young hypogonadal men. Andrologia. 2014;46(10):1107–12.PubMedCrossRefGoogle Scholar
  115. Lasaite L, Ceponis J, Preiksa RT, Zilaitiene B. Effects of two-year testosterone replacement therapy on cognition, emotions and quality of life in young and middle-aged hypogonadal men. Andrologia. 2017;49:3.CrossRefGoogle Scholar
  116. Lass N, Reinehr T. Low treatment adherence in pubertal children treated with thyroxin or growth hormone. Horm Res Paediatr. 2015;84(4):240–7.PubMedCrossRefGoogle Scholar
  117. Lee P, Schober J, Nordenstrom A, Hoebeke P, Houk C, Looijenga L, et al. Review of recent outcome data of disorders of sex development (DSD): emphasis on surgical and sexual outcomes. J Pediatr Urol. 2012;8(6):611–5.PubMedCrossRefGoogle Scholar
  118. Leger J. Congenital hypothyroidism: a clinical update of long-term outcome in young adults. Eur J Endocrinol. 2015;172(2):R67–77.PubMedCrossRefGoogle Scholar
  119. Leger J, Ecosse E, Roussey M, Lanoe JL, Larroque B. French congenital hypothyroidism study G. subtle health impairment and socioeducational attainment in young adult patients with congenital hypothyroidism diagnosed by neonatal screening: a longitudinal population-based cohort study. J Clin Endocrinol Metab. 2011;96(6):1771–82.PubMedCrossRefGoogle Scholar
  120. Leger J, Olivieri A, Donaldson M, Torresani T, Krude H, van Vliet G, et al. European Society for Paediatric Endocrinology consensus guidelines on screening, diagnosis, and management of congenital hypothyroidism. J Clin Endocrinol Metab. 2014;99(2):363–84.PubMedPubMedCentralCrossRefGoogle Scholar
  121. Leger J, Forhan A, Dos Santos S, Larroque B, Ecosse E, Charles MA, et al. Developmental milestones at one year for the offspring of mothers with congenital hypothyroidism: a population-based study. Eur J Endocrinol. 2018;178(5):471–80.PubMedCrossRefGoogle Scholar
  122. Lestishock L, Daley AM, White P. Pediatric nurse Practitioners' perspectives on health care transition from pediatric to adult care. J Pediatr Health Care. 2018;32(3):263–72.PubMedPubMedCentralCrossRefGoogle Scholar
  123. Liao LM, Tacconelli E, Wood D, Conway G, Creighton SM. Adolescent girls with disorders of sex development: a needs analysis of transitional care. J Pediatr Urol. 2010;6(6):609–13.PubMedCrossRefGoogle Scholar
  124. Loche S, Di Iorgi N, Patti G, Noli S, Giaccardi M, Olivieri I, et al. Growth hormone deficiency in the transition age. Endocr Dev. 2018;33:46–56.PubMedCrossRefGoogle Scholar
  125. Los E, Ulrich J, Guttmann-Bauman I. Technology use in transition-age patients with type 1 diabetes: reality and promises. J Diabetes Sci Technol. 2016;10(3):662–8.PubMedPubMedCentralCrossRefGoogle Scholar
  126. Maeng DD, Snyder SR, Davis TW, Tomcavage JF. Impact of a complex care management model on cost and utilization among adolescents and Young adults with special care and health needs. Popul Health Manag. 2017;20(6):435–41.PubMedPubMedCentralCrossRefGoogle Scholar
  127. Manning MA, Hoyme HE. Diagnosis and management of the adolescent boy with Klinefelter syndrome. Adolesc Med. 2002;13(2):367–74. viiiPubMedGoogle Scholar
  128. McCann-Crosby B, Chen MJ, Lyons SK, Lin Y, Axelrad M, Dietrich JE, et al. Nonclassical congenital adrenal hyperplasia: targets of treatment and transition. Pediatr Endocrinol Rev. 2014;12(2):224–38.PubMedGoogle Scholar
  129. McCracken KA, Fallat ME. Transition from pediatric to adult surgery care for patients with disorders of sexual development. Semin Pediatr Surg. 2015;24(2):88–92.PubMedCrossRefGoogle Scholar
  130. McDonagh JE, Viner RM. Lost in transition? Between paediatric and adult services. BMJ. 2006;332(7539):435–6.PubMedPubMedCentralCrossRefGoogle Scholar
  131. Michaud PA, Schrier L, Ross-Russel R, van der Heijden L, Dossche L, Copley S, et al. Paediatric departments need to improve residents' training in adolescent medicine and health: a position paper of the European academy of Paediatrics. Eur J Pediatr. 2018;177(4):479–87.PubMedPubMedCentralCrossRefGoogle Scholar
  132. Moran ME, Karkazis K. Developing a multidisciplinary team for disorders of sex development: planning, implementation, and operation tools for care providers. Adv Urol. 2012;2012:604135.PubMedPubMedCentralCrossRefGoogle Scholar
  133. Mortensen KH, Young L, De Backer J, Silberbach M, Collins RT, Duijnhouwer AL, et al. Cardiovascular imaging in turner syndrome: state-of-the-art practice across the lifespan. Heart. 2018;104(22):1823–31.PubMedCrossRefGoogle Scholar
  134. Mouriquand PD, Gorduza DB, Gay CL, Meyer-Bahlburg HF, Baker L, Baskin LS, et al. Surgery in disorders of sex development (DSD) with a gender issue: if (why), when, and how? J Pediatr Urol. 2016;12(3):139–49.PubMedCrossRefGoogle Scholar
  135. Moynihan M, Saewyc E, Whitehouse S, Paone M, McPherson G. Assessing readiness for transition from paediatric to adult health care: revision and psychometric evaluation of the am I ON TRAC for adult care questionnaire. J Adv Nurs. 2015;71(6):1324–35.PubMedPubMedCentralCrossRefGoogle Scholar
  136. Nazareth M, Hart L, Ferris M, Rak E, Hooper S, van Tilburg MAL. A parental report of youth transition readiness: the parent STARx questionnaire (STARx-P) and re-evaluation of the STARx child report. J Pediatr Nurs. 2018;38:122–6.PubMedPubMedCentralCrossRefGoogle Scholar
  137. Nishigaki S, Hamazaki T, Tsuruhara A, Yoshida T, Imamura T, Inada H, et al. Clinical features of women with turner syndrome experiencing transition period in Japan. Endocr J. 2017;64(5):499–505.PubMedCrossRefGoogle Scholar
  138. Noordman I, Duijnhouwer A, Kapusta L, Kempers M, Roeleveld N, Schokking M, et al. Phenotype in girls and women with turner syndrome: association between dysmorphic features, karyotype and cardio-aortic malformations. Eur J Med Genet. 2018;61(6):301–6.PubMedCrossRefGoogle Scholar
  139. Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, et al. Chronic health conditions in adult survivors of childhood cancer. N Engl J Med. 2006;355(15):1572–82.CrossRefPubMedGoogle Scholar
  140. Osterberg L, Blaschke T. Adherence to medication. N Engl J Med. 2005;353(5):487–97.PubMedCrossRefGoogle Scholar
  141. Ozbek MN, Demirbilek H, Baran RT, Baran A. Bone mineral density in adolescent girls with hypogonadotropic and hypergonadotropic hypogonadism. J Clin Res Pediatr Endocrinol. 2016;8(2):163–9.PubMedPubMedCentralCrossRefGoogle Scholar
  142. Pedreira CC, Hameed R, Kanumakala S, Zacharin M. Health-care problems of turner syndrome in the adult woman: a cross sectional study of a Victorian cohort and a case for transition. Intern Med J. 2006;36(1):54–7.PubMedCrossRefGoogle Scholar
  143. Peters A, Laffel L, American Diabetes Association Transitions Working G. 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. 2011;34(11):2477–2485.PubMedPubMedCentralCrossRefGoogle Scholar
  144. Phan-Hug F, Hauschild M, Dwyer A, Pitteloud N. Caring for patients with pediatric endocrinopathies and diabetes into adulthood: challenges of an often difficult transition. Rev Med Suisse. 2012;8(362):2170–2. 4PubMedGoogle Scholar
  145. Phan-Hug F, Kraus C, Paoloni-Giacobino A, Fellmann F, Typaldou SA, Ansermet F, et al. Patients with variations of sex development: an example of interdisciplinary care. Rev Med Suisse. 2016;12(538):1923–9.PubMedGoogle Scholar
  146. Polak M, Szinnai G. Paediatric thyroid disorders: new insights. Horm Res Paediatr. 2015;83(2):77–8.PubMedCrossRefGoogle Scholar
  147. Poplack DG, Fordis M, Landier W, Bhatia S, Hudson MM, Horowitz ME. Childhood cancer survivor care: development of the passport for care. Nat Rev Clin Oncol. 2014;11(12):740–50.PubMedPubMedCentralCrossRefGoogle Scholar
  148. Pyatak EA, Sequeira PA, Whittemore R, Vigen CP, Peters AL, Weigensberg MJ. Challenges contributing to disrupted transition from paediatric to adult diabetes care in young adults with type 1 diabetes. Diabet Med. 2014;31(12):1615–24.PubMedPubMedCentralCrossRefGoogle Scholar
  149. Radovick S, DiVall S. Approach to the growth hormone-deficient child during transition to adulthood. J Clin Endocrinol Metab. 2007;92(4):1195–200.PubMedCrossRefGoogle Scholar
  150. Rapp M, Mueller-Godeffroy E, Lee P, Roehle R, Kreukels BPC, Kohler B, et al. Multicentre cross-sectional clinical evaluation study about quality of LIFE in adults with disorders/differences of sex development (DSD) compared to country specific reference populations (DSD-LIFE). Health Qual Life Outcomes. 2018;16(1):54.PubMedPubMedCentralCrossRefGoogle Scholar
  151. Rare Disease Act of 2002 (42 U.S.C. 281); 2018.
  152. Raymond JK. Models of Care for Adolescents and Young Adults with type 1 diabetes in transition: shared medical appointments and telemedicine. Pediatr Ann. 2017;46(5):e193–e7.PubMedCrossRefGoogle Scholar
  153. Reifschneider K, Auble BA, Rose SR. Update of endocrine dysfunction following pediatric traumatic Brain injury. J Clin Med. 2015;4(8):1536–60.PubMedPubMedCentralCrossRefGoogle Scholar
  154. Reisch N, Arlt W, Krone N. Health problems in congenital adrenal hyperplasia due to 21-hydroxylase deficiency. Horm Res Paediatr. 2011;76(2):73–85.PubMedCrossRefGoogle Scholar
  155. Richmond E, Rogol AD. Treatment of growth hormone deficiency in children, adolescents and at the transitional age. Best Pract Res Clin Endocrinol Metab. 2016;30(6):749–55.PubMedCrossRefGoogle Scholar
  156. Rosenberg-Yunger ZR, Klassen AF, Amin L, Granek L, D'Agostino NM, Boydell KM, et al. Barriers and facilitators of transition from pediatric to adult long-term follow-up Care in Childhood Cancer Survivors. J Adolesc Young Adult Oncol. 2013;2(3):104–11.PubMedCrossRefGoogle Scholar
  157. Rubin K. Transitioning the patient with Turner's syndrome from pediatric to adult care. J Pediatr Endocrinol Metab. 2003;16(Suppl 3):651–9.PubMedGoogle Scholar
  158. Rubin KR. Turner syndrome: transition from pediatrics to adulthood. Endocr Pract. 2008;14(6):775–81.PubMedCrossRefGoogle Scholar
  159. Rutishauser C, Akre C, Suris JC. Transition from pediatric to adult health care: expectations of adolescents with chronic disorders and their parents. Eur J Pediatr. 2011;170(7):865–71.PubMedCrossRefGoogle Scholar
  160. Ryan S. The adolescent and young adult with Klinefelter syndrome:ensuring successful transitions to adulthood. Pediatr Endocrinol Rev. 2010;8(Suppl 1):169–77.PubMedGoogle Scholar
  161. Sakakibara H. Transition of women with turner syndrome from pediatrics to adult health care: current situation and associated problems. Front Pediatr. 2017;5:28.PubMedPubMedCentralCrossRefGoogle Scholar
  162. Sakakibara H, Yoshida H, Takei M, Katsuhata Y, Koyama M, Nagata T, et al. Health management of adults with turner syndrome: an attempt at multidisciplinary medical care by gynecologists in cooperation with specialists from other fields. J Obstet Gynaecol Res. 2011;37(7):836–42.PubMedCrossRefGoogle Scholar
  163. 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. 2011;36(2):160–71.CrossRefPubMedGoogle Scholar
  164. Schober J, Nordenstrom A, Hoebeke P, Lee P, Houk C, Looijenga L, et al. Disorders of sex development: summaries of long-term outcome studies. J Pediatr Urol. 2012;8(6):616–23.PubMedCrossRefGoogle Scholar
  165. Schultz AT, Smaldone A. Components of interventions that improve transitions to adult Care for Adolescents with Type 1 diabetes. J Adolesc Health. 2017;60(2):133–46.PubMedPubMedCentralCrossRefGoogle Scholar
  166. 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.PubMedPubMedCentralCrossRefGoogle Scholar
  167. Shankar RK, Backeljauw PF. Current best practice in the management of turner syndrome. Ther Adv Endocrinol Metab. 2018;9(1):33–40.PubMedCrossRefGoogle Scholar
  168. Sheehan AM, While AE, Coyne I. The experiences and impact of transition from child to adult healthcare services for young people with type 1 diabetes: a systematic review. Diabet Med. 2015;32(4):440–58.CrossRefPubMedGoogle Scholar
  169. Shiraishi K, Oka S, Matsuyama H. Assessment of quality of life during gonadotrophin treatment for male hypogonadotrophic hypogonadism. Clin Endocrinol. 2014;81(2):259–65.CrossRefGoogle Scholar
  170. Singh SP, Anderson B, Liabo K. Ganeshamoorthy T, guideline c. Supporting young people in their transition to adults' services: summary of NICE guidance BMJ. 2016;353:i2225.Google Scholar
  171. Skakkebaek A, Wallentin M, Gravholt CH. Neuropsychology and socioeconomic aspects of Klinefelter syndrome: new developments. Curr Opin Endocrinol Diabetes Obes. 2015;22(3):209–16.PubMedCrossRefGoogle Scholar
  172. Sklar CA, Antal Z, Chemaitilly W, Cohen LE, Follin C, Meacham LR, et al. Hypothalamic-pituitary and growth disorders in survivors of childhood cancer: an Endocrine Society clinical practice guideline. J Clin Endocrinol Metab. 2018;103(8):2761–84.PubMedCrossRefGoogle Scholar
  173. Snook ML, Henry LC, Sanfilippo JS, Zeleznik AJ, Kontos AP. Association of Concussion with Abnormal Menstrual Patterns in adolescent and Young women. JAMA Pediatr. 2017;171(9):879–86.PubMedPubMedCentralCrossRefGoogle Scholar
  174. Sokol RZ. It’s not all about the testes: medical issues in Klinefelter patients. Fertil Steril. 2012;98(2):261–5.PubMedCrossRefGoogle Scholar
  175. Speiser PW. Congenital adrenal hyperplasia: transition from childhood to adulthood. J Endocrinol Investig. 2001;24(9):681–91.CrossRefGoogle Scholar
  176. Speiser PW, Azziz R, Baskin LS, Ghizzoni L, Hensle TW, Merke DP, et al. Congenital adrenal hyperplasia due to steroid 21-hydroxylase deficiency: an Endocrine Society clinical practice guideline. J Clin Endocrinol Metab. 2010;95(9):4133–60.PubMedPubMedCentralCrossRefGoogle Scholar
  177. Stabler B. Impact of growth hormone (GH) therapy on quality of life along the lifespan of GH-treated patients. Horm Res. 2001;56(Suppl 1):55–8.PubMedGoogle Scholar
  178. Stanley T. Diagnosis of growth hormone deficiency in childhood. Curr Opin Endocrinol Diabetes Obes. 2012;19(1):47–52.PubMedPubMedCentralCrossRefGoogle Scholar
  179. Stinson J, Kohut SA, Spiegel L, White M, Gill N, Colbourne G, et al. A systematic review of transition readiness and transfer satisfaction measures for adolescents with chronic illness. Int J Adolesc Med Health. 2014;26(2):159–74.PubMedCrossRefGoogle Scholar
  180. Suris JC, Larbre JP, Hofer M, Hauschild M, Barrense-Dias Y, Berchtold A, et al. Transition from paediatric to adult care: what makes it easier for parents? Child Care Health Dev. 2017;43(1):152–5.PubMedCrossRefGoogle Scholar
  181. Suson KD. Transitional urology for male adolescents: what adult urologists should know. Curr Urol Rep. 2016;17(10):71.PubMedCrossRefGoogle Scholar
  182. Szalda D, Pierce L, Hobbie W, Ginsberg JP, Brumley L, Wasik M, et al. Engagement and experience with cancer-related follow-up care among young adult survivors of childhood cancer after transfer to adult care. J Cancer Surviv. 2016;10(2):342–50.PubMedCrossRefGoogle Scholar
  183. Tack LJW, Maris E, Looijenga LHJ, Hannema SE, Audi L, Kohler B, et al. Management of Gonads in adults with androgen insensitivity: an international survey. Horm Res Paediatr. 2018:1–11.Google Scholar
  184. Tam FI, Huebner A, Hofbauer LC, Rohayem J. Effects of adolescence-onset hypogonadism on metabolism, bone mineral density and quality of life in adulthood. J Pediatr Endocrinol Metab. 2015;28(9–10):1047–55.PubMedGoogle Scholar
  185. Tartaglia N, Howell S, Wilson R, Janusz J, Boada R, Martin S, et al. The eXtraordinarY kids clinic: an interdisciplinary model of care for children and adolescents with sex chromosome aneuploidy. J Multidiscip Healthc. 2015;8:323–34.PubMedPubMedCentralCrossRefGoogle Scholar
  186. Trust AHCsNF. 10 Steps Transition to Adult Services; 2018.
  187. Turriff A, Levy HP, Biesecker B. Prevalence and psychosocial correlates of depressive symptoms among adolescents and adults with Klinefelter syndrome. Genet Med. 2011;13(11):966–72.PubMedPubMedCentralCrossRefGoogle Scholar
  188. Turriff A, Macnamara E, Levy HP, Biesecker B. The impact of living with Klinefelter syndrome: a qualitative exploration of adolescents and adults. J Genet Couns. 2017;26(4):728–37.PubMedCrossRefGoogle Scholar
  189. Turunen S, Vaarasmaki M, Mannisto T, Hartikainen AL, Lahesmaa-Korpinen AM, Gissler M, et al. Pregnancy and perinatal outcome among hypothyroid mothers: a population based cohort study. Thyroid. 2018;Google Scholar
  190. Vaks Y, Bensen R, Steidtmann D, Wang TD, Platchek TS, Zulman DM, et al. Better health, less spending: redesigning the transition from pediatric to adult healthcare for youth with chronic illness. Healthc (Amst). 2016;4(1):57–68.CrossRefGoogle Scholar
  191. Van Vliet G, Deladoey J. Diagnosis, treatment and outcome of congenital hypothyroidism. Endocr Dev. 2014;26:50–9.PubMedCrossRefGoogle Scholar
  192. Verlinde F, Massa G, Lagrou K, Froidecoeur C, Bourguignon JP, Craen M, et al. Health and psychosocial status of patients with turner syndrome after transition to adulthood: the Belgian experience. Horm Res. 2004;62(4):161–7.PubMedGoogle Scholar
  193. Vestergaard Jensen M, Rugbjerg K, de Fine LS, Johansen C, Schmiegelow K, Kaae Andersen K, et al. Endocrine late effects in survivors of cancer in adolescence and Young adulthood: a Danish population-based cohort study. JAMA Netw Open. 2018;1(2):e180349. Scholar
  194. Vidal I, Gorduza DB, Haraux E, Gay CL, Chatelain P, Nicolino M, et al. Surgical options in disorders of sex development (DSD) with ambiguous genitalia. Best Pract Res Clin Endocrinol Metab. 2010;24(2):311–24.PubMedCrossRefGoogle Scholar
  195. Vincent AJ, Nguyen HH, Ranasinha S, Vollenhoven B. Increased detection of co-morbidities with evaluation at a dedicated adult turner syndrome clinic. Climacteric. 2017;20(5):442–7.PubMedCrossRefGoogle Scholar
  196. Wafa S, Nakhla M. Improving the transition from pediatric to adult diabetes healthcare: a literature review. Can J Diabetes. 2015;39(6):520–8.PubMedCrossRefGoogle Scholar
  197. Wagner A, Brucker SY, Ueding E, Grober-Gratz D, Simoes E, Rall K, et al. Treatment management during the adolescent transition period of girls and young women with Mayer-Rokitansky-Kuster-Hauser syndrome (MRKHS): a systematic literature review. Orphanet J Rare Dis. 2016;11(1):152.PubMedPubMedCentralCrossRefGoogle Scholar
  198. Warshaw H, Edelman D. Building bridges through collaboration and consensus: expanding awareness and use of peer support and peer support communities among people with diabetes, caregivers, and health care providers. J Diabetes Sci Technol. 2019;13(2):206–12.PubMedCrossRefGoogle Scholar
  199. Weinstein AG, Henrich CC, Armstrong GT, Stratton KL, King TZ, Leisenring WM, et al. Roles of positive psychological outcomes in future health perception and mental health problems: a report from the childhood cancer survivor study. Psychooncology. 2018;27(12):2754–60.PubMedCrossRefPubMedCentralGoogle Scholar
  200. White PC, Bachega TA. Congenital adrenal hyperplasia due to 21 hydroxylase deficiency: from birth to adulthood. Semin Reprod Med. 2012;30(5):400–9.PubMedCrossRefGoogle Scholar
  201. White M, O'Connell MA, Cameron FJ. Transition to adult endocrine services: what is achievable? The diabetes perspective. Best Pract Res Clin Endocrinol Metab. 2015;29(3):497–504.PubMedCrossRefGoogle Scholar
  202. White PH, Cooley WC, Transitions Clinical Report Authoring G, American Academy Of P, American Academy Of Family P, American College Of P. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142:5.CrossRefGoogle Scholar
  203. Wikstrom AM, Dunkel L. Klinefelter syndrome. Best Pract Res Clin Endocrinol Metab. 2011;25(2):239–50.PubMedCrossRefGoogle Scholar
  204. Yeung SC, Chiu AC, Vassilopoulou-Sellin R, Gagel RF. The endocrine effects of nonhormonal antineoplastic therapy. Endocr Rev. 1998;19(2):144–72.PubMedCrossRefGoogle Scholar
  205. Zeltzer LK, Lu Q, Leisenring W, Tsao JC, Recklitis C, Armstrong G, et al. Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomark Prev. 2008;17(2):435–46.CrossRefGoogle Scholar
  206. Zhang LF, Ho JS, Kennedy SE. A systematic review of the psychometric properties of transition readiness assessment tools in adolescents with chronic disease. BMC Pediatr. 2014;14:4.PubMedPubMedCentralCrossRefGoogle Scholar
  207. Zoni S, Verga ME, Hauschild M, Aquarone-Vaucher MP, Gyuriga T, Ramelet AS, et al. Patient perspectives on nurse-led consultations within a pilot structured transition program for Young adults moving from an academic tertiary setting to community-based type 1 diabetes care. J Pediatr Nurs. 2018;38:99–105.PubMedPubMedCentralCrossRefGoogle Scholar

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© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.William F. Connell School of Nursing, Boston CollegeChestnut HillUSA
  2. 2.Yvonne L. Munn Center for Nursing Research, Massachusetts General HospitalBostonUSA
  3. 3.Center for Endocrinology and Metabolism in Young Adults (CEMjA), Lausanne University Hospital and University of LausanneLausanneSwitzerland
  4. 4.Pediatric Endocrinology and Diabetology Unit, Service of PediatricsLausanne University Hospital and University of LausanneLausanneSwitzerland

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