Demographics of paediatric renal replacement therapy in Europe: a report of the ESPN/ERA–EDTA registry
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.
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.
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.
Considerable variation exists in the current demographics of children treated with RRT across Europe.
KeywordsPaediatrics Renal replacement therapy Chronic kidney failure Europe Incidence Prevalence Survival
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.
- 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/
- 5.European Commission (2013) ESPN/ERA-EDTA Website. Available at: http://epp.eurostat.ec.europa.eu/
- 6.ERA-EDTA Registry (2013) ERA-EDTA Registry annual report 2011. Available at: http://www.era-edta-reg.org/files/annualreports/pdf/AnnRep2011.pdf
- 10.Pocock SJ, Clayton TC, Altman DG (2002) Survival plots of time-to-event outcomes in clinical trials: good practice and pitfalls. Lancet 359:1686–1689Google Scholar
- 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 16:1120–1129PubMedCrossRefGoogle Scholar
- 12.World Health Organization Regional Office for Europe (2012) European Mortality Database. Available at: http://data.euro.who.int/
- 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.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.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.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.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 32:399–409PubMedCrossRefPubMedCentralGoogle Scholar
- 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 13:2066–2074PubMedCrossRefGoogle Scholar
- 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 25:3325–3332PubMedCrossRefGoogle Scholar
- 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 6:1094–1099Google Scholar