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Safely Transitioning Patients in Nephrology

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Abstract

Purpose

In this review, we outline the guiding principles of safe and effective healthcare transition in adolescents and young adults (AYA) with kidney disease. We describe the inherent challenges associated with the process and review the available literature and resources that may support the healthcare team in achieving successful and safe transition.

Recent Findings

Safely guiding patients and families through the transition from pediatric to adult care is an important responsibility of the pediatric healthcare team. Growing evidence shows that lack of transition readiness increases morbidity and mortality in patients with chronic kidney disease and reduces allograft survival in transplanted AYA. Multidisciplinary efforts from multiple pediatric groups have developed evidence-based tools to holistically assess transition readiness and implement healthcare transition programs.

Summary

Increasing numbers of children with kidney disease are under the care of specialist pediatricians and pediatric nephrologists. Advancing diagnostics, medical management, and access to kidney replacement therapies—including both dialysis and transplantation—have steadily improved outcomes for these children. Thankfully, many are surviving childhood and adolescence and ultimately require transition to adult services. Without proper preparation for a successful healthcare transition, AYAs are at particularly high risk for poor health outcomes during this time. Growing evidence supports early, multi-disciplinary evaluation of patients and their families to inform the development of individualized transition programs which consider all aspects of this complex process. Herein, we compile the available evidence relating to best practice for healthcare transition and review available tools and strategies to promote better outcomes in this vulnerable AYA group.

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References

Papers of particular interest, published recently, have been highlighted as: • Of importance

  1. United States Renal Data System. 2022 USRDS Annual Data Report: epidemiology of kidney disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, 2022.

  2. Lewis MA, Shaw J, Sinha MD, Adalat S, Hussain F, Castledine C, et al. Chapter 14: Demography of the UK Paediatric Renal Replacement Therapy population in 2008. Nephron Clin Pract. 2010;115(1):c279–88.

  3. Dobbels F, Van Damme-Lombaert R, Vanhaecke J, De Geest S. Growing pains: non-adherence with the immunosuppressive regimen in adolescent transplant recipients. Pediatr Transplant. 2005;9(3):381–90.

    Article  PubMed  Google Scholar 

  4. Samuel SM, Nettel-Aguirre A, Soo A, Hemmelgarn B, Tonelli M, Foster B. Avoidable hospitalizations in youth with kidney failure after transfer to or with only adult care. Pediatrics. 2014;133(4):e993-1000.

    Article  PubMed  Google Scholar 

  5. Watson AR. Non-compliance and transfer from paediatric to adult transplant unit. Pediatr Nephrol Berl Ger. 2000;14(6):469–72.

    Article  CAS  Google Scholar 

  6. Prestidge C, Romann A, Djurdjev O, Matsuda-Abedini M. Utility and cost of a renal transplant transition clinic. Pediatr Nephrol Berl Ger. 2012;27(2):295–302.

    Article  Google Scholar 

  7. Francis A, Johnson DW, Melk A, Foster BJ, Blazek K, Craig JC, et al. Survival after kidney transplantation during childhood and adolescence. Clin J Am Soc Nephrol CJASN. 2020;15(3):392–400.

    Article  PubMed  Google Scholar 

  8. Harden PN, Walsh G, Bandler N, Bradley S, Lonsdale D, Taylor J, et al. Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ. 2012;1(344):e3718.

    Article  Google Scholar 

  9. Watson AR, Harden PN, Ferris ME, Kerr PG, Mahan JD, Ramzy MF, et al. Transition from pediatric to adult renal services: a consensus statement by the International Society of Nephrology (ISN) and the International Pediatric Nephrology Association (IPNA). Kidney Int. 2011;80(7):704–7.

    Article  PubMed  Google Scholar 

  10. Kubota W, Honda M, Okada H, Hattori M, Iwano M, Akioka Y, et al. A consensus statement on health-care transition of patients with childhood-onset chronic kidney diseases: providing adequate medical care in adolescence and young adulthood. Clin Exp Nephrol. 2018;22(4):743–51.

    Article  PubMed  Google Scholar 

  11. Pape L, Ernst G. Health care transition from pediatric to adult care: an evidence-based guideline. Eur J Pediatr. 2022;181(5):1951–8. This article provides a comprehensive overview of recent evidence relating to the transition from pediatric to adult care, it is not specific to nephrology patients.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Toulany A, Gorter JW, Harrison M. A call for action: recommendations to improve transition to adult care for youth with complex health care needs. Paediatr Child Health. 2022;27(5):297–309. Recently published guidance on the transition of AYAs with complex medical conditions, highlighting key principles of transition care which are relevant to the safe transition of nephrology patients.

    Article  PubMed  PubMed Central  Google Scholar 

  13. White PH, Cooley WC, Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, et al. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2018;142(5):e20182587.

  14. Tangri N, Peach EJ, Franzén S, Barone S, Kushner PR. Patient management and clinical outcomes associated with a recorded diagnosis of stage 3 chronic kidney disease: the REVEAL-CKD Study. Adv Ther. 2023;40(6):2869–85.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  15. Koenig CJ, Maguen S, Daley A, Cohen G, Seal KH. Passing the baton: a grounded practical theory of handoff communication between multidisciplinary providers in two department of veterans affairs outpatient settings. J Gen Intern Med. 2013;28(1):41–50.

    Article  PubMed  Google Scholar 

  16. Foster BJ, Dahhou M, Zhang X, Platt RW, Samuel SM, Hanley JA. Association between age and graft failure rates in young kidney transplant recipients. Transplantation. 2011;92(11):1237–43.

    Article  PubMed  Google Scholar 

  17. Van Arendonk KJ, James NT, Boyarsky BJ, Garonzik-Wang JM, Orandi BJ, Magee JC, et al. Age at graft loss after pediatric kidney transplantation: exploring the high-risk age window. Clin J Am Soc Nephrol CJASN. 2013;8(6):1019–26.

    Article  PubMed  Google Scholar 

  18. Gogtay N, Giedd JN, Lusk L, Hayashi KM, Greenstein D, Vaituzis AC, et al. Dynamic mapping of human cortical development during childhood through early adulthood. Proc Natl Acad Sci U S A. 2004;101(21):8174–9.

    Article  ADS  CAS  PubMed  PubMed Central  Google Scholar 

  19. Matsuda-Abedini M, Marks SD, Foster BJ. Transition of young adult kidney transplant recipients. Pediatr Nephrol. 2023;38(2):383–90. A very recent review highlighting the important barriers to successful healthcare transition for kidney transplant recipients.

    Article  PubMed  Google Scholar 

  20. Hartung EA, Erus G, Jawad AF, Laney N, Doshi JJ, Hooper SR, et al. Brain magnetic resonance imaging findings in children and young adults with CKD. Am J Kidney Dis Off J Natl Kidney Found. 2018;72(3):349–59.

    Article  Google Scholar 

  21. Hooper SR, Gerson AC, Butler RW, Gipson DS, Mendley SR, Lande MB, et al. Neurocognitive functioning of children and adolescents with mild-to-moderate chronic kidney disease. Clin J Am Soc Nephrol CJASN. 2011;6(8):1824–30.

    Article  PubMed  Google Scholar 

  22. Chen K, Didsbury M, van Zwieten A, Howell M, Kim S, Tong A, et al. Neurocognitive and educational outcomes in children and adolescents with CKD: a systematic review and meta-analysis. Clin J Am Soc Nephrol CJASN. 2018;13(3):387–97.

    Article  PubMed  Google Scholar 

  23. Murray PD, Brodermann MH, Gralla J, Wiseman AC, Harden PN. Academic achievement and employment in young adults with end-stage kidney disease. J Ren Care. 2019;45(1):29–40.

    Article  PubMed  Google Scholar 

  24. Rodriguez Cuellar CI, de la García Puente S, Hernández Moraria J, Bojórquez Ochoa A, Filler G, Zaltzman Grishevich S. High depression rates among pediatric renal replacement therapy patients: a cross-sectional study. Pediatr Transplant. 2019;23(8):e13591.

    Article  PubMed  Google Scholar 

  25. Bangudi S, Shankar D, Stanek C, Hart L, Nahata L, Cronin RM, et al. Primary care provider use and depression screening among transitioning adolescents and young adults with sickle cell disease. Blood. 2022;140(Supplement 1):7983–4.

    Article  Google Scholar 

  26. Kreuzer M, Drube J, Prüfe J, Schaefer F, Pape L. Current management of transition of young people affected by rare renal conditions in the ERKNet. Eur J Hum Genet. 2019;27(12):1783–90.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Wildes DM, Costigan CS, Kinlough M, Flynn J, Dolan N, Riordan M, et al. Transitional care models in adolescent kidney transplant recipients - a systematic review. Nephrol Dial Transplant Off Publ Eur Dial Transpl Assoc - Eur Ren Assoc. 2022;gfac175. A recent systematic review which served as a call to action, highlighting the need for improvement in transitional care models for patients with kidney transplants.

  28. Narla NP, Ratner L, Bastos FV, Owusu SA, Osei-Bonsu A, Russ CM. Paediatric to adult healthcare transition in resource-limited settings: a narrative review. BMJ Paediatr Open. 2021;5(1):e001059.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Nagra A, McGinnity PM, Davis N, Salmon AP. Implementing transition: ready steady go. Arch Dis Child Educ Pract Ed. 2015;100(6):313–20.

    Article  PubMed  PubMed Central  Google Scholar 

  30. Ardissino G, Testa S, Daccò V, Paglialonga F, Viganò S, Felice-Civitillo C, et al. Puberty is associated with increased deterioration of renal function in patients with CKD: data from the ItalKid Project. Arch Dis Child. 2012;97(10):885–8.

    Article  PubMed  Google Scholar 

  31. Celedón CG, Bitsori M, Tullus K. Progression of chronic renal failure in children with dysplastic kidneys. Pediatr Nephrol. 2007;22(7):1014–20.

    Article  Google Scholar 

  32. Yassaee A, Hale D, Armitage A, Viner R. The impact of age of transfer on outcomes in the transition from pediatric to adult health systems: a systematic review of reviews. J Adolesc Health Off Publ Soc Adolesc Med. 2019;64(6):709–20.

    Article  Google Scholar 

  33. Zhong Y, Gilleskie DB, van Tilburg MAL, Hooper SR, Rak E, Javalkar K, et al. Longitudinal self-management and/or transition readiness per the TRxANSITION index among patients with chronic conditions in pediatric or adult care settings. J Pediatr. 2018;203:361-370.e1.

    Article  PubMed  Google Scholar 

  34. McPherson M, Thaniel L, Minniti CP. Transition of patients with sickle cell disease from pediatric to adult care: assessing patient readiness. Pediatr Blood Cancer. 2009;52(7):838–41.

    Article  PubMed  Google Scholar 

  35. Schwartz LA, Tuchman LK, Hobbie WL, Ginsberg JP. A social-ecological model of readiness for transition to adult-oriented care for adolescents and young adults with chronic health conditions. Child Care Health Dev. 2011;37(6):883–95.

    Article  CAS  PubMed  Google Scholar 

  36. van Staa AL, Jedeloo S, van Meeteren J, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev. 2011;37(6):821–32.

    Article  PubMed  Google Scholar 

  37. 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.

    Article  PubMed  Google Scholar 

  38. 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.

    Article  PubMed  Google Scholar 

  39. Cohen E, Gandhi S, Toulany A, Moore C, Fu L, Orkin J, et al. Health care use during transfer to adult care among youth with chronic conditions. Pediatrics. 2016;137(3):e20152734.

    Article  PubMed  Google 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.

    Article  PubMed  Google Scholar 

  41. Díaz-González de Ferris ME, Del Villar-Vilchis M, Guerrero R, Barajas-Valencia VM, Vander-Schaaf EB, de Pomposo A, et al. Self-management and health care transition among adolescents and young adults with chronic kidney disease: medical and psychosocial considerations. Adv Chronic Kidney Dis. 2017;24(6):405–9.

  42. Ferris M, Cohen S, Haberman C, Javalkar K, Massengill S, Mahan JD, et al. Self-management and transition readiness assessment: development, reliability, and factor structure of the STARx Questionnaire. J Pediatr Nurs. 2015;30(5):691–9.

    Article  CAS  PubMed  Google Scholar 

  43. 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.

    Article  PubMed  Google Scholar 

  44. Scarponi D, Cammaroto V, Pasini A, La Scola C, Mencarelli F, Bertulli C, et al. Multidisciplinarity in transition pathways for patients with kidney disease: the current state of play. Front Pediatr [Internet]. 2021 [cited 2023 Jul 28];9. Available from: https://www.frontiersin.org/articles/10.3389/fped.2021.689758.

  45. Nishi L, Langman C, Ghossein C. A nephrology pediatric to adult transition clinic: a pilot program. Kidney Med. 2019;1(6):405–6.

    Article  PubMed  PubMed Central  Google Scholar 

  46. Watson AR. Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol Berl Ger. 2005;20(2):113–7.

    Article  Google Scholar 

  47. Weitz M, Heeringa S, Neuhaus TJ, Fehr T, Laube GF. Standardized multilevel transition program: does it affect renal transplant outcome? Pediatr Transplant. 2015;19(7):691–7.

    Article  PubMed  Google Scholar 

  48. Harmer MJ, Everitt LH, Parker L, Davis N, Connett G, Nagra A. Structured transition is associated with improved outcomes in diabetes. Pract Diabetes. 2022;39(1):18–22a.

    Article  Google Scholar 

  49. Raina R, Wang J, Krishnappa V. Structured transition protocol for children with cystinosis. Front Pediatr. 2017;5:191.

    Article  PubMed  PubMed Central  Google Scholar 

  50. Schraeder K, Allemang B, Scott C, McBrien K, Dimitropoulos G, Felske A, et al. Primary care during the transition to adult care for adolescents involved with pediatric specialty services: a scoping review protocol. Syst Rev. 2021;10(1):46.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Lovera LA, Trejos J, Encarnación LK, Pereira C, Padilla A, Restrepo JM, et al. Caracterización de adolescentes trasplantados de riñón y en protocolo pretasplante en Cali, Colombia. Enferm Nefrológica. 2022;25(2):133–9.

    Article  Google Scholar 

  52. Muñoz FNB, Montilla LAL, Oviedo LAA, Restrepo JMR. Significado de la transición infancia-adolescencia-juventud en personas con enfermedad renal crónica. Cult Los Cuid. 2018;50:34–47.

    Google Scholar 

  53. Paone MC, Wigle M, Saewyc E. The ON TRAC model for transitional care of adolescents. Prog Transplant Aliso Viejo Calif. 2006;16(4):291–302.

    Article  Google Scholar 

  54. Corr M, McKeaveney C, Wurm F, Courtney A, Noble H. Patient education interventions for adolescent and young adult kidney transplant recipients- a scoping review. PLoS ONE. 2023;18(7):e0288807.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  55. Ferris ME, Mahan JD. Pediatric chronic kidney disease and the process of health care transition. Semin Nephrol. 2009;29(4):435–44.

    Article  PubMed  Google Scholar 

  56. Von Scheven E, Tucker LB, Moorthy LN, Lawson EF, Neville C, DaCosta D, et al. Improving transition readiness and quality of life (QOL) with a pediatric lupus health passport. Pediatr Rheumatol. 2012;10(1):A23.

    Article  Google Scholar 

  57. McQuillan RF, Toulany A, Kaufman M, Schiff JR. Benefits of a transfer clinic in adolescent and young adult kidney transplant patients. Can J Kidney Health Dis. 2015;1(2):81.

    Article  Google Scholar 

  58. Allemang B, Allan K, Johnson C, Cheong M, Cheung P, Odame I, et al. Impact of a transition program with navigator on loss to follow-up, medication adherence, and appointment attendance in hemoglobinopathies. Pediatr Blood Cancer. 2019;66(8):e27781.

    Article  PubMed  Google Scholar 

  59. Dimitropoulos G, Morgan-Maver E, Allemang B, Schraeder K, Scott SD, Pinzon J, et al. Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care. BMC Health Serv Res. 2019;19(1):390.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Luke A, Doucet S, Azar R. Paediatric patient navigation models of care in Canada: an environmental scan. Paediatr Child Health. 2018;23(3):e46-55.

    Article  PubMed  PubMed Central  Google Scholar 

  61. Wells KJ, Battaglia TA, Dudley DJ, Garcia R, Greene A, Calhoun E, et al. Patient navigation: state of the art or is it science? Cancer. 2008;113(8):1999–2010.

    Article  PubMed  Google Scholar 

  62. Johnson MAJ, Javalkar K, van Tilburg M, Haberman C, Rak E, Ferris ME. The relationship of transition readiness, self-efficacy, and adherence to preferred health learning method by youths with chronic conditions. J Pediatr Nurs. 2015;30(5):e83-90.

    Article  PubMed  Google Scholar 

  63. Fair C, Rupp S, Hart L, Alvarez-Elías A, Perry M, Ferris M. Defining successful transition: pediatric provider perspective. In: Applied Mathematical Modelling. 2018. p 191–200.

  64. Low JK, Manias E. Use of technology-based tools to support adolescents and young adults with chronic disease: systematic review and meta-analysis. JMIR MHealth UHealth. 2019;7(7):e12042.

    Article  PubMed  PubMed Central  Google Scholar 

  65. Green JA, Ephraim PL, Hill-Briggs FF, Browne T, Strigo TS, Hauer CL, et al. Putting patients at the center of kidney care transitions: PREPARE NOW, a cluster randomized controlled trial. Contemp Clin Trials. 2018;73:98–110.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  66. Green JA, Ephraim PL, Hill-Briggs F, Browne T, Strigo TS, Hauer CL, et al. Integrated digital health system tools to support decision making and treatment preparation in CKD: the PREPARE NOW Study. Kidney Med. 2021;3(4):565-575.e1.

    Article  PubMed  PubMed Central  Google Scholar 

  67. Barney A, Buckelew S, Mesheriakova V, Raymond-Flesch M. The COVID-19 pandemic and rapid implementation of adolescent and young adult telemedicine: challenges and opportunities for innovation. J Adolesc Health. 2020;67(2):164.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Klein JD, Koletzko B, El-Shabrawi MH, Hadjipanayis A, Thacker N, Bhutta Z. Promoting and supporting children’s health and healthcare during COVID-19 – International Paediatric Association Position Statement. Arch Dis Child. 2020;105(7):620–4.

    Article  PubMed  Google Scholar 

  69. Committee on Improving the Health, Safety, and Well-Being of YoungAdults, Board on Children, Youth, and Families, Institute of Medicine, National Research Council. Investing in the health and well-being of young adults [Internet]. Bonnie RJ, Stroud C, Breiner H, editors. Washington (DC): National Academies Press (US); 2015 [cited 2023 Nov 30]. Available from: http://www.ncbi.nlm.nih.gov/books/NBK284787/.

  70. Transition to adulthood for youth with chronic conditions and special health care Needs. J Adolesc Health. 2020;66(5):631–4.

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Authors and Affiliations

  1. Division of Nephrology, The Hospital for Sick Children, 555 University Ave, Toronto, ON, M5G1E8, Canada

    Caoimhe Suzanne Costigan & Ashlene M. McKay

  2. Peter Gilgan Centre for Research and Learning, University of Toronto, Toronto, Canada

    Caoimhe Suzanne Costigan

  3. Department of Nephrology and Transplantation, Children’s Health Ireland, Dublin, Ireland

    Dermot Michael Wildes

  4. Renal Research Institute, New York, NY, USA

    Ana Catalina Alvarez-Elias

  5. Departamento de Investigación Clínica, Federico Gómez, Hospital Infantil de México, México City, Mexico

    Ana Catalina Alvarez-Elias

  6. Department of Pediatrics, University of Toronto, Toronto, Canada

    Ashlene M. McKay

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  1. Caoimhe Suzanne Costigan
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  2. Dermot Michael Wildes
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  3. Ana Catalina Alvarez-Elias
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  4. Ashlene M. McKay
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CC wrote the main manuscript text and prepared the original figures and tables. DW, AC, and AM edited the main text and creatively contributed to conceptualizing the tables and figures. All authors critically reviewed the final manuscript and agree to its submission.

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Correspondence to Caoimhe Suzanne Costigan.

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Costigan, C.S., Wildes, D.M., Alvarez-Elias, A.C. et al. Safely Transitioning Patients in Nephrology. Curr Pediatr Rep 12, 1–10 (2024). https://doi.org/10.1007/s40124-024-00312-y

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