Abstract
Transition in medical care is a high-risk period in adolescence and young adulthood. To date, data on transition policy, its application in practice, and transition procedures in patients with rare, hereditary kidney diseases in Europe is scarce. An online survey was developed and was distributed within the paediatric centres of the European Reference Network for Rare Kidney Diseases (ERKNet) aiming to assess the transition-relevant structures from the providers’ perspectives. Its items were based on the consensus statement on transition published by the International Society of Nephrology (ISN) and the International Paediatric Nephrology Association (IPNA) in 2011. Forty-six paediatric experts based at 28/32 ERKNet university hospitals participated. Annually, a median number of 14 patients (1–80) are transferred to adult based care. One centre continued to care for paediatric kidney transplant recipients throughout their entire lifespan. Choosing this option terminated the survey and no further data was obtained from this centre. 29/45 experts confirmed the application of an—at least unwritten—transition procedure (64%). Transition clinics are offered by 23 experts. Most physicians (40%) transfer patients at age 18–19, 10 experts at age <18. Most physicians transfer the patients to a university hospital and/or a community hospital. The transition guidelines have been implemented in ERKNet centres only partly and with huge heterogeneity. Implementation of transition tools and structures within ERKNet could improve health of children with hereditary kidney diseases. Adherence of experts to the transition-guidelines was significantly correlated with gross national income of their countries.
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References
Harambat J, van Stralen KJ, Kim JJ, Tizard EJ. Epidemiology of chronic kidney disease in children. Pediatr Nephrol. 2012;27:363–73.
Leung JC. Inherited renal diseases. Curr Pediatr Rev. 2014;10:95–100.
Wenderfer SE, Gaut JP. Glomerular diseases in children. Adv Chronic Kidney Dis. 2017;24:364–71.
Foster BJ. Heightened graft failure risk during emerging adulthood and transition to adult care. Pediatr Nephrol. 2015;30:567–76.
Johnson MA, 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:e83–90.
Francis A, Johnson DW, Craig JC, Wong G. Moving on: transitioning young people with chronic kidney disease to adult care. Pediatr Nephrol. 2018;33:973–83.
Javalkar K, Fenton N, Cohen S, Ferris M. 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. 2014;11:E117.
Javalkar K, Johnson M, Kshirsagar AV, Ocegueda S, Detwiler RK, Ferris M. Ecological factors predict transition readiness/self-management in youth with chronic conditions. J Adolesc Health. 2016;58:40–6.
Forbes TA, Watson AR, Zurowska A, Shroff R, Bakkaloglu S, Vondrak K, et al. Adherence to transition guidelines in European paediatric nephrology units. Pediatr Nephrol. 2014;29:1617–24.
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;344:e3718.
Nagra A, McGinnity PM, Davis N, Salmon AP. Implementing transition: ready steady go. Arch Dis Child Educ Pract Ed. 2015;100:313–20.
Paone MC, Wigle M, Saewyc E. TheON TRAC model for transitional care of adolescents. Prog Transplant. 2006;16:291–302.
Weitz M, Heeringa S, Neuhaus TJ, Fehr T, Laube GF. Standardized multilevel transition program: does it affect renal transplant outcome? Pediatr Transplant. 2015;19:691–7.
Coyne B, Hallowell SC, Thompson M. Measurable outcomes after transfer from pediatric to adult providers in youth with chronic illness. J Adolesc Health. 2017;60:3–16.
Kreuzer M, Prüfe J, Tönshoff B, Pape L. Survey on management of transition and transfer from pediatric- to adult-based care in pediatric kidney transplant recipients in Europe. Transplant Direct. 2018;4:e361.
The World Bank Group. GNI, Atlas Method (Current US$). 2017. Available at http://data.worldbank.org/indicator/NY.GNI.ATLS.CD.
Anelli CG, Len CA, Terreri MTRA, Russo GCS, Reiff AO. Translation and validation of the Transition Readiness Assessment Questionnaire (TRAQ). J Pediatr. 2019;95:180–7.
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;36:160–71.
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;14:415–22.
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.
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;30:668–76.
Watson A, Hilton D, Hackett D. Therapeutic recreation camps to provide a residential experience for young people in transition to adult renal units. Pediatr Nephrol. 2010;25:787–8.
Kreuzer M, Prufe J, Bethe D, Vogel C, Grosshennig A, Koch A, et al. 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. 2014;15:505.
Suhling H, Rademacher J, Zinowsky I, Fuge J, Greer M, Warnecke G, et al. Conventional vs. tablet computer-based patient education following lung transplantation—a randomized controlled trial. PLoS ONE. 2014;9:e90828.
Foster BJ, Platt RW, Dahhou M, Zhang X, Bell LE, Hanley JA. The impact of age at transfer from pediatric to adult-oriented care on renal allograft survival. Pediatr Transplant. 2011;15:750–9.
Prufe J, Dierks ML, Bethe D, Oldhafer M, Muther S, Thumfart J, et al. Transition structures and timing of transfer from paediatric to adult-based care after kidney transplantation in Germany: a qualitative study. BMJ Open. 2017;7:e015593.
Hattori M, Iwano M, Sako M, Honda M, Okada H, Akioka Y, et al. 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. 2016;20:918–25.
Webb N, Harden P, Lewis C, Tizzard S, Walsh G, Wray J, et al. Building consensus on transition of transplant patients from paediatric to adult healthcare. Arch Dis Child. 2010;95:606–11.
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MK and LP conceived the survey and wrote the first draft of the manuscript. MK, FS, and LP designed the survey. MK performed the statistical analysis. MK, JD, JP, FS and LP participated in research design, read, revised, and approved the manuscript.
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Kreuzer, M., Drube, J., Prüfe, J. et al. Current management of transition of young people affected by rare renal conditions in the ERKNet. Eur J Hum Genet 27, 1783–1790 (2019). https://doi.org/10.1038/s41431-019-0460-z
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DOI: https://doi.org/10.1038/s41431-019-0460-z
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