Pediatric Nephrology

, Volume 33, Issue 6, pp 973–983 | Cite as

Moving on: transitioning young people with chronic kidney disease to adult care

  • Anna FrancisEmail author
  • David W. Johnson
  • Jonathan C. Craig
  • Germaine Wong
Educational Review


Advances in the care of children mean that adolescents with chronic kidney disease (CKD) are surviving to adulthood and requiring transition to adult care. The transition phase is well-recognised to be associated with considerable excess morbidity and graft loss, but these outcomes may be avoidable through a structured transition programme. This review will discuss the (1) challenges encountered by patients with CKD, caregivers and clinicians during transition; (2) predictors and outcomes of transition; (3) current guidelines on transition from paediatric to adult renal services; (4) interventions and research directions that may help to improve the care and outcomes for young people with CKD in transition. In spite of the substantial improvement in health gains required for this disadvantaged population, there is to date only limited evidence on the effects of current transition programmes.


Adolescent Child Chronic renal insufficiency Graft survival Kidney transplantation Transition to adult care Young adult 


Compliance with ethical standards

Conflict of interest

The authors declare no conflict of interest.


  1. 1.
    Ferris ME, Gipson DS, Kimmel PL, Eggers PW (2006) Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol 21:1020–1026CrossRefPubMedGoogle Scholar
  2. 2.
    MacNeill SJ, Casula A, Shaw C, Castledine C (2016) UK renal registry 18th annual report: chapter 2 UK renal replacement therapy prevalence in 2014: national and centre-specific analyses. Nephron 132[Suppl 1]:41–68CrossRefPubMedGoogle Scholar
  3. 3.
    ANZDATA Registry (2016) 38th Report, chapter 2: prevalence of end stage kidney disease. Australia and New Zealand Dialysis and Transplant Registry, AdelaideGoogle Scholar
  4. 4.
    Saran R, Li Y, Robinson B, Abbott KC, Agodoa LY, Ayanian J, Bragg-Gresham J, Balkrishnan R, Chen JL, Cope E, Eggers PW, Gillen D, Gipson D, Hailpern SM, Hall YN, He K, Herman W, Heung M, Hirth RA, Hutton D, Jacobsen SJ, Kalantar-Zadeh K, Kovesdy CP, Lu Y, Molnar MZ, Morgenstern H, Nallamothu B, Nguyen DV, O’Hare AM, Plattner B, Pisoni R, Port FK, Rao P, Rhee CM, Sakhuja A, Schaubel DE, Selewski DT, Shahinian V, Sim JJ, Song P, Streja E, Kurella Tamura M, Tentori F, White S, Woodside K, Hirth RA (2016) US renal data system 2015 annual data report: epidemiology of kidney disease in the United States. Am J Kidney Dis 67(Svii):S1–305Google Scholar
  5. 5.
    Lochridge J, Wolff J, Oliva M, O’Sullivan-Oliveira J (2013) Perceptions of solid organ transplant recipients regarding self-care management and transitioning. Pediatr Nurs 39:81–89PubMedGoogle Scholar
  6. 6.
    Perry EE, Zheng K, Ferris ME, Torres L, Bickford K, Segal JH (2011) Invited manuscript poster on renal-related education American Society of Nephrology, Nov. 16–21, 2010. Adolescents with chronic kidney disease and their need for online peer mentoring: a qualitative investigation of social support and healthcare transition. Ren Fail 33:663–668CrossRefPubMedGoogle Scholar
  7. 7.
    Tong A, Lowe A, Sainsbury P, Craig JC (2008) Experiences of parents who have children with chronic kidney disease: a systematic review of qualitative studies. Pediatrics 121:349–360CrossRefPubMedGoogle Scholar
  8. 8.
    Tong A, Wong G, Hodson E, Walker RG, Tjaden L, Craig JC (2013) Adolescent views on transition in diabetes and nephrology. Eur J Pediatr 172:293–304CrossRefPubMedGoogle Scholar
  9. 9.
    Arnett JJ (2000) Emerging adulthood. A theory of development from the late teens through the twenties. Am Psychol 55:469–480CrossRefPubMedGoogle Scholar
  10. 10.
    Bell LE, Bartosh SM, Davis CL, Dobbels F, Al-Uzri A, Lotstein D, Reiss J, Dharnidharka VR (2008) Adolescent transition to adult care in solid organ transplantation: a consensus conference report. Am J Transplant 8:2230–2242CrossRefPubMedGoogle Scholar
  11. 11.
    Watson AR, Harden P, Ferris M, Kerr PG, Mahan J, Ramzy MF (2011) Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International pediatric nephrology Association (IPNA). Pediatr Nephrol 26:1753–1757CrossRefPubMedGoogle Scholar
  12. 12.
    Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB (1993) Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health 14:570–576CrossRefPubMedGoogle Scholar
  13. 13.
    Transitions Clinical Report Authoring G, Cooley WC, Sagerman PJ (2011) Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 128:182–200CrossRefGoogle Scholar
  14. 14.
    Foster BJ, Dahhou M, Zhang X, Platt RW, Samuel SM, Hanley JA (2011) Association between age and graft failure rates in young kidney transplant recipients. Transplantation 92:1237–1243CrossRefPubMedGoogle Scholar
  15. 15.
    Kiberd JA, Acott P, Kiberd BA (2011) Kidney transplant survival in pediatric and young adults. BMC Nephrol 12:54CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Andreoni KA, Forbes R, Andreoni RM, Phillips G, Stewart H, Ferris M (2013) Age-related kidney transplant outcomes: health disparities amplified in adolescence. JAMA Intern Med 173:1524–1532CrossRefPubMedGoogle Scholar
  17. 17.
    Harden PN, Walsh G, Bandler N, Bradley S, Lonsdale D, Taylor J, Marks SD (2012) Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ 344:e3718CrossRefPubMedGoogle Scholar
  18. 18.
    Ghazanfar A, Roberts D, Palmer A, Shenoy M, Riad HN (2011) Transfer vs transition in paediatric renal allograft recipients; experience over two decades. Pediatr Transplant 15:41–439 (Abstract #209)CrossRefGoogle Scholar
  19. 19.
    Chaturvedi S, Jones CL, Walker RG, Sawyer SM (2009) The transition of kidney transplant recipients: a work in progress. Pediatr Nephrol 24:1055–1060CrossRefPubMedGoogle Scholar
  20. 20.
    Prestidge C, Romann A, Djurdjev O, Matsuda-Abedini M (2012) Utility and cost of a renal transplant transition clinic. Pediatr Nephrol 27:295–302CrossRefPubMedGoogle Scholar
  21. 21.
    Weitz M, Heeringa S, Neuhaus TJ, Fehr T, Laube GF (2015) Standardized multilevel transition program: does it affect renal transplant outcome? Pediatr Transplant 19:691–697CrossRefPubMedGoogle Scholar
  22. 22.
    Pape L, Lammermuhle J, Oldhafer M, Blume C, Weiss R, Ahlenstiel T (2013) Different models of transition to adult care after pediatric kidney transplantation: a comparative study. Pediatr Transplant 17:518–524CrossRefPubMedGoogle Scholar
  23. 23.
    Giedd JN (2008) The teen brain: insights from neuroimaging. J Adolesc Health 42:335–343CrossRefPubMedGoogle Scholar
  24. 24.
    Bawden HN, Acott P, Carter J, Lirenman D, MacDonald GW, McAllister M, McDonnell MC, Shea S, Crocker J (2004) Neuropsychological functioning in end-stage renal disease. Arch Dis Child 89:644–647CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Gipson DS, Hooper SR, Duquette PJ, Wetherington CE, Stellwagen KK, Jenkins TL, Ferris ME (2006) Memory and executive functions in pediatric chronic kidney disease. Child Neuropsychol 12:391–405CrossRefPubMedGoogle Scholar
  26. 26.
    Wong CJ, Moxey-Mims M, Jerry-Fluker J, Warady BA, Furth SL (2012) CKiD (CKD in children) prospective cohort study: a review of current findings. Am J Kidney Dis 60:1002–1011CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Groothoff JW, Grootenhuis M, Dommerholt A, Gruppen MP, Offringa M, Heymans HS (2002) Impaired cognition and schooling in adults with end stage renal disease since childhood. Arch Dis Child 87:380–385CrossRefPubMedPubMedCentralGoogle Scholar
  28. 28.
    Penkower L, Dew MA, Ellis D, Sereika SM, Kitutu JM, Shapiro R (2003) Psychological distress and adherence to the medical regimen among adolescent renal transplant recipients. Am J Transplant 3:1418–1425CrossRefPubMedGoogle Scholar
  29. 29.
    Johnson RJ, Warady BA (2013) Long-term neurocognitive outcomes of patients with end-stage renal disease during infancy. Pediatr Nephrol 28:1283–1291CrossRefPubMedGoogle Scholar
  30. 30.
    Icard P, Hooper SR, Gipson DS, Ferris ME (2010) Cognitive improvement in children with CKD after transplant. Pediatr Transplant 14:887–890CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Moos RH (2002) Life stressors, social resources, and coping skills in youth: applications to adolescents with chronic disorders. J Adolesc Health 30:22–29CrossRefPubMedGoogle Scholar
  32. 32.
    Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA (2006) Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health 39:4–13CrossRefPubMedGoogle Scholar
  33. 33.
    Lewis H, Marks SD (2014) Differences between paediatric and adult presentation of ESKD in attainment of adult social goals. Pediatr Nephrol 29:2379–2385CrossRefPubMedGoogle Scholar
  34. 34.
    Forbes TA, Watson AR, Zurowska A, Shroff R, Bakkaloglu S, Vondrak K, Fischbach M, Van de Walle J, Ariceta G, Edefonti A, Aufricht C, Jankauskiene A, Holta T, Ekim M, Schmitt CP, Stefanidis C, European Paediatric Dialysis Working Group (2014) Adherence to transition guidelines in European paediatric nephrology units. Pediatr Nephrol 29:1617–1624CrossRefPubMedGoogle Scholar
  35. 35.
    McCurdy C, DiCenso A, Boblin S, Ludwin D, Bryant-Lukosius D, Bosompra K (2006) There to here: young adult patients’ perceptions of the process of transition from pediatric to adult transplant care. Prog Transplant 16:309–316CrossRefPubMedGoogle Scholar
  36. 36.
    Tong A, Gow K, Wong G, Henning P, Carroll R (2015) Patient perspectives of a young adult renal clinic: a mixed-methods evaluation. Nephrology 20:352–359CrossRefPubMedGoogle Scholar
  37. 37.
    Peter NG, Forke CM, Ginsburg KR, Schwarz DF (2009) Transition from pediatric to adult care: internists’ perspectives. Pediatrics 123:417–423CrossRefPubMedGoogle Scholar
  38. 38.
    Braj B, Picone G, Children HF, Cross N, Pearlman L (1999) The lived experience of adolescents who transfer from a pediatric to an adult hemodialysis centre. CANNT J 9:41–46PubMedGoogle Scholar
  39. 39.
    Stabile L, Rosser L, Porterfield KM, McCauley S, Levenson C, Haglund J, Christman K (2005) Transfer versus transition: success in pediatric transplantation brings the welcome challenge of transition. Prog Transplant 15:363–370CrossRefPubMedGoogle Scholar
  40. 40.
    Foster BJ (2015) Heightened graft failure risk during emerging adulthood and transition to adult care. Pediatr Nephrol 30:567–576CrossRefPubMedGoogle Scholar
  41. 41.
    Smith JM, Ho PL, McDonald RA, North American Pediatric Renal Transplant Cooperative S (2002) Renal transplant outcomes in adolescents: a report of the North American pediatric renal transplant cooperative study. Pediatr Transplant 6:493–499CrossRefPubMedGoogle Scholar
  42. 42.
    Dobbels F, Ruppar T, De Geest S, Decorte A, Van Damme-Lombaerts R, Fine RN (2010) Adherence to the immunosuppressive regimen in pediatric kidney transplant recipients: a systematic review. Pediatr Transplant 14:603–613CrossRefPubMedGoogle Scholar
  43. 43.
    Samuel SM, Nettel-Aguirre A, Hemmelgarn BR, Tonelli MA, Soo A, Clark C, Alexander RT, Foster BJ, Pediatric Renal Outcomes Canada G (2011) Graft failure and adaptation period to adult healthcare centers in pediatric renal transplant patients. Transplantation 91:1380–1385CrossRefPubMedGoogle Scholar
  44. 44.
    Samuel SM, Nettel-Aguirre A, Soo A, Hemmelgarn B, Tonelli M, Foster B (2014) Avoidable hospitalizations in youth with kidney failure after transfer to or with only adult care. Pediatrics 133:e993–1000CrossRefPubMedGoogle Scholar
  45. 45.
    Annunziato RA, Kim SK (2015) Assessment in transition: options, challenges, and future directions. Pediatr Transplant 19:446–448CrossRefPubMedGoogle Scholar
  46. 46.
    Watson AR (2000) Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol 14:469–472CrossRefPubMedGoogle Scholar
  47. 47.
    van den Heuvel ME, van der Lee JH, Cornelissen EA, Bemelman FJ, Hoitsma A, Geskus RB, Bouts AH, Groothoff JW (2010) Transition to the adult nephrologist does not induce acute renal transplant rejection. Nephrol Dial Transplant 25:1662–1667CrossRefPubMedGoogle Scholar
  48. 48.
    Koshy SM, Hebert D, Lam K, Stukel TA, Guttmann A (2009) Renal allograft loss during transition to adult healthcare services among pediatric renal transplant patients. Transplantation 87:1733–1736CrossRefPubMedGoogle Scholar
  49. 49.
    Sattoe JN, Jedeloo S, van Staa A (2013) Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of camp COOL. BMC Nephrol 14:279CrossRefPubMedPubMedCentralGoogle Scholar
  50. 50.
    Fenton N, Ferris M, Ko Z, Javalkar K, Hooper SR (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. J Pediatr Rehabil Med 8:13–22PubMedGoogle Scholar
  51. 51.
    Foster BJ, Platt RW, Dahhou M, Zhang X, Bell LE, Hanley JA (2011) The impact of age at transfer from pediatric to adult-oriented care on renal allograft survival. Pediatr Transplant 15:750–759CrossRefPubMedGoogle Scholar
  52. 52.
    Javalkar K, Fenton N, Cohen S, Ferris M (2014) Socioecologic factors as predictors of readiness for self-management and transition, medication adherence, and health care utilization among adolescents and young adults with chronic kidney disease. Prev Chronic Dis 11:E117CrossRefPubMedPubMedCentralGoogle Scholar
  53. 53.
    Singh SP, Anderson B, Liabo K, Ganeshamoorthy T, Guideline C (2016) Supporting young people in their transition to adults’ services: summary of NICE guidance. BMJ 353:i2225CrossRefPubMedGoogle Scholar
  54. 54.
    Hattori M, Iwano M, Sako M, Honda M, Okada H, Akioka Y, Ashida A, Kawasaki Y, Kiyomoto H, Terada Y, Hirano D, Fujieda M, Fujimoto S, Masaki T, Maruyama S, Mastuo S (2016) Transition of adolescent and young adult patients with childhood-onset chronic kidney disease from pediatric to adult renal services: a nationwide survey in Japan. Clin Exp Nephrol 20:918–925CrossRefPubMedGoogle Scholar
  55. 55.
    Bell L (2007) Adolescent dialysis patient transition to adult care: a cross-sectional survey. Pediatr Nephrol 22:720–726CrossRefPubMedGoogle Scholar
  56. 56.
    Paone MC, Wigle M, Saewyc E (2006) The ON TRAC model for transitional care of adolescents. Prog Transplant 16:291–302CrossRefPubMedGoogle Scholar
  57. 57.
    Gilleland J, Amaral S, Mee L, Blount R (2012) Getting ready to leave: transition readiness in adolescent kidney transplant recipients. J Pediatr Psychol 37:85–96CrossRefPubMedGoogle Scholar
  58. 58.
    Ferris ME, Harward DH, Bickford K, Layton JB, Ferris MT, Hogan SL, Gipson DS, McCoy LP, Hooper SR (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 Fail 34:744–753CrossRefGoogle Scholar
  59. 59.
    Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W, Reiss J, Wood D (2011) Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ--transition readiness assessment questionnaire. J Pediatr Psychol 36:160–171CrossRefPubMedGoogle Scholar
  60. 60.
    Korus M, Cruchley E, Stinson JN, Gold A, Anthony SJ (2015) Usability testing of the internet program: “teens taking charge: managing my transplant online”. Pediatr Transplant 19:107–117CrossRefPubMedGoogle Scholar
  61. 61.
    Kreuzer M, Prufe J, Bethe D, Vogel C, Grosshennig A, Koch A, Oldhafer M, Dierks ML, Albrecht UV, Muther S, Brunkhorst R, Pape L, Study group of the German Society for Pediatric N (2014) The TRANSNephro-study examining a new transition model for post-kidney transplant adolescents and an analysis of the present health care: study protocol for a randomized controlled trial. Trials 15:505CrossRefPubMedPubMedCentralGoogle Scholar
  62. 62.
    Akchurin OM, Melamed ML, Hashim BL, Kaskel FJ, Del Rio M (2014) Medication adherence in the transition of adolescent kidney transplant recipients to the adult care. Pediatr Transplant 18:538–548CrossRefPubMedPubMedCentralGoogle Scholar
  63. 63.
    Annunziato RA, Parbhakar M, Kapoor K, Matloff R, Casey N, Benchimol C, Hotchkiss H, Nair V, Saland J (2015) Can transition to adult care for transplant recipients be improved by intensified services while patients are still in pediatrics? Prog Transplant 25:236–242CrossRefPubMedGoogle Scholar

Copyright information

© IPNA 2017

Authors and Affiliations

  1. 1.Sydney School of Public HealthUniversity of SydneyCamperdownAustralia
  2. 2.Department of NephrologyPrincess Alexandra HospitalBrisbaneAustralia
  3. 3.Australasian Kidney Trials Network, Diamantina InstituteUniversity of QueenslandBrisbaneAustralia
  4. 4.Translational Research InstituteBrisbaneAustralia

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