Demographics of paediatric renal replacement therapy in Europe: a report of the ESPN/ERA–EDTA registry

Abstract

Background

The ESPN/ERA–EDTA Registry collects data on European children with end-stage renal disease receiving renal replacement therapy (RRT) who are listed on national and regional renal registries in Europe. In this paper we report on the analysis of demographic data collected from 2009 to 2011.

Methods

Data on primary renal disease, incidence, prevalence, 4-year survival, transplantation rate and causes of death in paediatric patients receiving RRT were extracted from the ESPN/ERA–EDTA Registry for 37 European countries.

Results

The incidence of RRT in paediatric patients in Europe during the study period was 5.5 cases per million age-related population (pmarp) in patients aged 0–14 years and varied markedly between countries (interquartile range 3.4–7.0 years). The prevalence of RRT was 27.9 pmarp and increased with age, with 67 % of prevalent patients living with a functioning graft. The probability of receiving a transplant within 4 years was 76.9 % and was lowest in patients aged 0–4 years (68.9 %). Mortality in paediatric patients treated with RRT was 55-fold higher than that of the general EU paediatric population. Overall survival at 4 years was 93.7 %, with the poorest survival in patients aged 0–4 years and in patients starting on dialysis. Infections (19.9 %) were the primary cause of death in European paediatric RRT patients.

Conclusion

Considerable variation exists in the current demographics of children treated with RRT across Europe.

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References

  1. 1.

    Harambat J, van Stralen KJ, Kim JJ, Tizard EJ (2012) Epidemiology of chronic kidney disease in children. Pediatr Nephrol 27:363–373

    PubMed  Article  PubMed Central  Google Scholar 

  2. 2.

    Tizard EJ, Verrina E, van Stralen KJ, Jager KJ (2009) Progress with the European society for paediatric nephrology (ESPN)/ERA-EDTA registry for children with established renal failure (ERF). Nephrol Dial Transplant 24:2615–2617

    PubMed  Article  PubMed Central  Google Scholar 

  3. 3.

    ESPN/ERA-EDTA Website (European Society of Pediatric Nephrology/European Renal Association–European Dialysis and Transplant Association) (2013). Available at: http://www.espn-reg.org/

  4. 4.

    Jager KJ, Zoccali C, Kramar R, Dekker FW (2007) Measuring disease occurrence. Kidney Int 72:412–5

    PubMed  Article  CAS  Google Scholar 

  5. 5.

    European Commission (2013) ESPN/ERA-EDTA Website. Available at: http://epp.eurostat.ec.europa.eu/

  6. 6.

    ERA-EDTA Registry (2013) ERA-EDTA Registry annual report 2011. Available at: http://www.era-edta-reg.org/files/annualreports/pdf/AnnRep2011.pdf

  7. 7.

    Schwartz GJ, Muñoz A, Schneider MF, Mak RH, Kaskel F, Warady BA, Furth SL (2009) New equations to estimate GFR in children with CKD. J Am Soc Nephrol 20:629–637

    PubMed  Article  PubMed Central  Google Scholar 

  8. 8.

    National Kidney Foundation (NKF) (2006) KDOQI clinical practice guidelines and clinical practice recommendations for 2006 updates: hemodialysis adequacy, peritoneal dialysis adequacy and vascular access. Am J Kidney Dis 48:S1–S322

    Article  Google Scholar 

  9. 9.

    Noordzij M, Leffondré K, van Stralen KJ, Zoccali C, Dekker FW, Jager KJ (2013) When do we need competing risks methods for survival analysis in nephrology? Nephrol Dial Transplant 28:2670–2677

    PubMed  Article  Google Scholar 

  10. 10.

    Pocock SJ, Clayton TC, Altman DG (2002) Survival plots of time-to-event outcomes in clinical trials: good practice and pitfalls. Lancet 359:1686–1689

  11. 11.

    Van Dijk PC, Jager KJ, de Charro F, Collart F, Cornet R, Dekker FW, Grönhagen-Riska C, Kramar R, Leivestad T, Simpson K, Briggs JD, ERA-EDTA registry (2001) Renal replacement therapy in Europe: the results of a collaborative effort by the ERA-EDTA registry and six national or regional registries. Nephrol Dial Transplant 16:1120–1129

    PubMed  Article  Google Scholar 

  12. 12.

    World Health Organization Regional Office for Europe (2012) European Mortality Database. Available at: http://data.euro.who.int/

  13. 13.

    The Malaysian Dialysis and Transplant Registry (2012) 20th Report of the Malaysian Dialysis & Transplant Registry. Available at: http://www.msn.org.my/fwbPagePublic.jsp?fwbPageId=pMdtr2012

  14. 14.

    U.S. Renal Data System (2012) USRDS 2012 annual data report: atlas of chronic kidney disease and end-stage renal disease in the United States. National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Washington DC. Available at: http://www.usrds.org/atlas12.aspx

  15. 15.

    Australia and New Zealand Dialysis and Transplant Registry (2012) ANZDATA registry report 2012. Available at: http://www.anzdata.org.au/v1/report_2012.html

  16. 16.

    U.S. Renal Data System (2013) USRDS 2013 annual data report: atlas of chronic kidney disease and end-stage renal disease in the United States. Available at: http://www.usrds.org/atlas.aspx

  17. 17.

    Schaefer F, Borzych-Duzalka D, Azocar M, Munarriz RL, Sever L, Aksu N, Barbosa LS, Galan YS, Xu H, Coccia PA, Szabo A, Wong W, Salim R, Vidal E, Pottoore S, Warady BA, IPPN investigators (2012) Impact of global economic disparities on practices and outcomes of chronic peritoneal dialysis in children: insights from the international pediatric peritoneal dialysis network registry. Perit Dial Int 32:399–409

    PubMed  Article  PubMed Central  Google Scholar 

  18. 18.

    Harambat J, van Stralen KJ, Schaefer F, Grenda R, Jankauskiene A, Kostic M, Macher MA, Maxwell H, Puretic Z, Raes A, Rubik J, Sørensen SS, Toots U, Topaloglu R, Tönshoff B, Verrina E, Jager KJ (2013) Disparities in policies, practices and rates of pediatric kidney transplantation in Europe. Am J Transplant 13:2066–2074

    PubMed  Article  CAS  Google Scholar 

  19. 19.

    van Stralen KJ, Tizard EJ, Jager KJ, Schaefer F, Vondrak K, Groothoff JW, Podracká L, Holmberg C, Jankauskiené A, Lewis MA, van Damme-Lombaerts R, Mota C, Niaudet P, Novljan G, Peco-Antic A, Sahpazova E, Toots U, Verrina E (2010) Determinants of eGFR at start of renal replacement therapy in paediatric patients. Nephrol Dial Transplant 25:3325–3332

    PubMed  Article  Google Scholar 

  20. 20.

    Samuel SM, Tonelli M a, Foster BJ, Alexander RT, Nettel-Aguirre A, Soo A, Hemmelgarn BR; Pediatric Renal Outcomes Canada Group (2011) Survival in pediatric dialysis and transplant patients. Clin J Am Soc Nephrol 6:1094–1099

  21. 21.

    McDonald SP, Craig JC (2004) Long-term survival of children with end-stage renal disease. N Engl J Med 350:2654–2662

    PubMed  Article  CAS  Google Scholar 

  22. 22.

    Lin H-H, Tsai C-W, Lin P-H, Cheng KF, Wu HD, Wang IK, Lin CY, Chen W, Huang CC (2012) Survival analysis of pediatric dialysis patients in Taiwan. Nephrology (Carlton) 17:621–627

    Article  Google Scholar 

  23. 23.

    Mitsnefes MM, Laskin BL, Dahhou M, Zhang X, Foster BJ (2013) Mortality risk among children initially treated with dialysis for End-stage kidney disease, 1990–2010. JAMA 309:1921–1929

    PubMed  Article  CAS  PubMed Central  Google Scholar 

  24. 24.

    Roberts MA, Polkinghorne KR, McDonald SP, Lerino FL (2011) Secular trends in cardiovascular mortality rates of patients receiving dialysis compared with the general population. Am J Kidney Dis 58:64–72

    PubMed  Article  Google Scholar 

  25. 25.

    Van der Heijden BJ, van Dijk PCW, Verrier-Jones K, Jager KJ, Briggs JD (2004) Renal replacement therapy in children: data from 12 registries in Europe. Pediatr Nephrol 19:213–221

    PubMed  Article  Google Scholar 

  26. 26.

    Vogelzang JL, Jager KJ, Groothoff JW (2013) Trend from cardiovascular to non-cardiovascular late mortality in patients with renal replacement therapy since childhood. Nephrol Dial Transplant 28:2082–2089

    PubMed  Article  Google Scholar 

  27. 27.

    Groothoff JW, Gruppen MP, Offringa M, Hutten J, Lilien MR, Van De Kar NJ, Wolff ED, Davin JC, Heymans HS (2002) Mortality and causes of death of end-stage renal disease in children: a Dutch cohort study. Kidney Int 61:621–629

    PubMed  Article  Google Scholar 

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Acknowledgments

We would like to thank the patients, their parents and the staff of all the dialysis and transplant units who have contributed data via their national registries and contact persons. We also would like to thank R. Coppo, D. Haffner, J. Harambat and C. Stefanidis for being members of the ESPN/ERA-EDTA Registry Committee, D Shitza, R Kramar, R Oberbauer, S Baiko, A Sukalo, K van Hoeck, F Collart, JM des Grottes, D Pokrajac, H. Resić, B Prnjavorac, D Roussinov, D Batinić, M Lemac, J Slavicek, T Seeman, K Vondrak, JG Heaf, U Toots, P Finne, C Grönhagen-Riska, C Couchoud, M Lasalle, E Sahpazova, G Gersdorf, C Barth, C Scholz, B Tönshoff G Ioannidis, A Kapogiannis, F Papachristou, G Reusz, S Túri, L Szabó, T Szabó, Zs Györke, E Kis, R Palsson, V Edvardsson, B Gianoglio, T de Palo, C Pecoraro, S Picca, S Testa, E Vidal, F Mencarelli, A Jankauskiene, B Pundziene, V Said-Conti, S Gatcan, O Berbeca, N Zaikova, S Pavićević, T Leivestad, A Bjerre, A Zurowska, I Zagozdzon, C Mota, M Almeida, C Afonso, G Mircescu, L Garneata, E Podgoreanu, EA Molchanova, NA Tomilina, BT Bikbov, M Kostic, A Peco-Antic, S Puric, D Kruscic, B Spasojevic-Dimitrijeva, G Milosecski-Lomic D Paripovic, L Podracka, G Kolvek, J Buturovic-Ponikvar, G Novljan, N Battelino, A Alonso Melgar and the Spanish Pediatric Registry, S Schön, KG Prütz, A Seeberger, L Backmän, M Evans, CE Kuenhi, E Maurer, G Laube, G Simometi, A Hoitsma, A Hemke and all centers participating in the RichQ study; R Topaloglu, A Duzova, D Ivanov, M Sinha and the staff of the UK renal registry for contributing data to the ESPN/ERA-EDTA Registry. The ESPN/ERA–EDTA registry is funded by the European Society of Pediatric Nephrology (ESPN), the European Renal Association and European Dialysis and Transplant Association (ERA–EDTA). This publication arises from the project of the ESPN/ERA-EDTA registry (ESPN_FY2013) which has received funding from the European Union, in the framework of the Health programme.

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Correspondence to Karlijn J. Van Stralen.

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Nicholas Chesnaye and Marjolein Bonthuis contributed equally to the manuscript.

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Chesnaye, N., Bonthuis, M., Schaefer, F. et al. Demographics of paediatric renal replacement therapy in Europe: a report of the ESPN/ERA–EDTA registry. Pediatr Nephrol 29, 2403–2410 (2014). https://doi.org/10.1007/s00467-014-2884-6

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Keywords

  • Paediatrics
  • Renal replacement therapy
  • Chronic kidney failure
  • Europe
  • Incidence
  • Prevalence
  • Survival