Nephrology Dialysis Transplantation

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1 Nephrol Dial Transplant (1999) 14: Dialysis and Transplantation News Nephrology Dialysis Transplantation Annual Report of the German Renal Registry 1998 Ulrich Frei1, Hans-Jürgen Schober-Halstenberg2 and the QuaSi-Niere Task Group for Quality Assurance in Renal Replacement Therapy Members of the Task Group: K. Albrecht, H. Becker, W. J. Brech, K. Erben, W. Fassbinder, U. Frei (Chair), K.-H. Götz, R. Hoffmann, M. Jeschke, H. Kütemeyer, A. Landmann, C. Müller, G. Offner, B. Peschke, H. T. Riegel, Ch. Szymkowiak, Ch. Tast and K. Thieler 1Department of Nephrology and Medical Intensive Care, Universitätsklinikum Charité, Campus Virchow-Klinikum and 2Projektgeschäftsstelle QuaSi-Niere, Berlin, Germany Abstract During the past 3 years, the basis of a therapy ( RRT) in Germany as reported previously German Renal Registry has been established. An agreement [1]. QuaSi-Niere collects annually in its centre survey between end-stage renal disease ( ESRD) therapy data on the incidence, prevalence, treatment modality, providers, insurance companies and the government morbidity and mortality of end-stage renal disease has been reached to fund and support the registry ( ESRD). Individual patient data are collected continuously office and its electronic data base. An overall acceptable throughout the year. The office of the registry is compliance has been achieved to provide data volun- based at the Berlin Medical Association and is funded tarily, although in the future the data submission will by a grant of the Federal Ministry of Health and gets have to be mandatory to achieve complete data sam- financial support from the German dialysis providers pling within an acceptable time frame. In Germany, ( Kuratorium für Dialyse und Nierentransplantation 713 patients per million population (p.m.p.) are on e.v. KfH, Patientenheimversorgung Gemeinnützige renal replacement therapy ( RRT). The incidence of Stiftung PHV, Deutsche Dialysegesellschaft niedergel- new patients commencing RRT is 156 p.m.p. These assener Ärzte e.v. DDnÄ) and the patients association numbers are comparable with those reported from ( Dialysepatienten Deutschlands e.v.) as well. In the other European countries such as France, Italy and future, QuaSi-Niere will be financed by the German Spain, but significantly lower than those reported from health insurances and the dialysis providers. the US or Japan. More than 92% of all dialysis patients QuaSi-Niere gathers its information by voluntary are treated by haemodialysis and only a limited number reporting of almost all of the German RRT facilities. with peritoneal dialysis. Approximately 25% of the An on-line reporting system for continuous data assessment patients have a functioning kidney graft. The transplantation on morbidity and outcome parameters is under rate of 25 p.m.p. is far from sufficient if development. This will avoid the actual burden of most compared with Spain, Austria or the US. Although an of the paper work with individual patient registration increasing number of diabetic patients commenced and follow up. RRT, the percentage, i.e. ~30%, is less than in the The individual patient register basically is supported US or Japan. The annual growth of the population on by the trust and confidence of all those patients in renal replacement cannot currently be given precisely Germany, who gave their informed consent to deliver because the database is still limited, but it seems to be their personal data. Major efforts have been successful ~3 4%. in establishing an effective system of data protection which has been approved by the federal and state data protection board. Background Compared with 1995, the centre survey 1996 has been modified and the questions have been rephrased This is the third Report of the German Renal Registrythe completely voluntary basis of reporting which to make them more precise. A continuous concern is Project Quality Assurance in Renal Replacement Therapy (QuaSi-Niere) since its founding in 1994, and necessitates intensive efforts to obtain a nearly comthe first one published in English. QuaSi-Niere has plete data set. Although a legal basis for quality begun to establish a new database for renal replacement assurance in the medical supply exists, there is no formal obligation for the institutions to provide data. A mandatory reporting seems to be necessary and Correspondence and offprint requests to: U. Frei, Department of Nephrology, Virchow-Klinikum, Augustenburger Platz 1, D hopefully will be established in the future. Berlin, Germany. The data provided have been analysed concerning 1999 European Renal Association European Dialysis and Transplant Association

2 1086 completeness and plausibility, and cross-checked with other available sources. Comparison with regional, national and international registries has been made. The present report is divided into two parts, i.e. the centre survey and patient survey. QuaSi-Niere has made this Annual Report available on its website ( in the Internet. U. Frei et al. 60% CAPD. Thirty of all centres carried out transplant patient follow-up themselves, whereas 80% did this in cooperation with a special transplant centre. Twentynine centres reported taking care of pediatric patients, defined as care of ESRD children and adolescents (children <15 years of age, or adolescents 18 years of age). Centre survey 1996 Prevalence of adult ESRD patients (>18 years of age) At the end of 1996, the number of all patients on Known centres and reporting frequency according to ESRD therapy (dialysis or transplant) was , or federal state 713 p.m.p. Of these, were treated with dialy- sis and had a functioning transplant, At the end of 1996 ( ), 858 different centres were treated with one modality of haemodialysis providing RRT therapy were known to the registry (HD/HF/HDF) and 3140 with peritoneal dialysis, i.e. office. Of these, 809 or 94.8% replied to the centre only 7.3% of the dialysis population receives peritoneal survey. The reporting frequency was different in the dialysis. A total of patients were treated with German federal states, with frequencies between 80 HD, 3953 with HDF and 577 with HF. Home HD and 100%, the lowest in Hamburg and the highest in played only a minor role: 643 out of HD Lower Saxony, Saarland and Thuringia. Up to July patients performed home dialysis. On average, , 85 additional facilities for RRT have been p.m.p. were treated by HD and 524 with any mode of registered. dialysis. Again significant regional differences were found (see Table 3). The prevalence of dialysis patients Characteristics of facilities in ESRD therapy varied between 427 p.m.p. in Saxony and 647 p.m.p. in Bavaria. A total of patients were reported to This item addressed the number of available stations live with a functioning transplant, i.e. 26% of the for haemodialysis ( HD), haemofiltration ( HF ) or ESRD population. This figure should be treated with haemodiafiltration ( HDF), the availability for periton- caution, however, because there may have been some eal dialysis training and care and the cooperation with overreporting, the same patient being reported by the transplant centres as well as transplant follow-up. On primary nephrologist and as well as by the transplant average, 176 HD/HF/HDF stations p.m.p. have been centres. available. On average, 2.8 patients are treated per station (range , see Table 2). Notable differences Incidence of new adult ESRD patients were found between federal states, ranging from 115 p.m.p. in Saxony to 198 p.m.p. in Baden-Württemberg During 1996, new adult patients commenced (see Table 2). Thirty-four of the centres offered ESRD therapy. This is an incidence of 156 new patients in-centre APD/IPD, 45% APD/CCPD at home and p.m.p. Peritoneal dialysis as the first treatment modal- ity was reported in 7.7%. The incidence varied between 123 p.m.p. in Mecklenburg-Western and 206 p.m.p. in Saarland (see Table 4). Table 1. Summary overview on ESRD therapy in Germany 1996 (compared with 1995) Viral infections 1996 (1995) The number of ESRD patients suffering from viral infections [hepatitis B virus ( HBV ), hepatitis C virus Total no. of ESRD patients (54 656) ( HCV ) and human immunodeficiency virus ( HIV )] Children <15 years 568 (267) was assessed. A total of 780 dialysis patients (1.8%) Adolescents years 293 (137) were infected by HBV, 2365 ( 5.5%) had HCV antibod- Prevalence of ESRD therapy 713 per million (674) ies and 24 HIV antibodies. Out of the transplanted Total no. of dialysis patients (41 350) patients, 484 were infected by HBV (3.25%), 847 ( 5.7%) had HCV antibodies and seven had HIV Prevalence 524 per million (511) Patients on haemodialysis (38 268) antibodies. Patients on peritoneal dialysis 3140 (3082) Patients with a functioning transplant (13 306) Transplantation Commencement of ESRD therapy (11 731) As mentioned above, the transplant figures may be Incidence 156 per million (145) inflated by overreporting. Nevertheless, it is useful to Haemodialysis treatment (10 568) Peritoneal dialysis treatment 963 (1163) compare the states with respect to overall transplant Children and adolescents 141 (124) activity and new registrations for the waiting lists Deceased dialysis patients 7119 (6392) ( Table 5). Where available, data of Eurotransplant are included. A total of patients was reported to be

3 Annual Report of the German Renal Registry Table 2. Number of dialysis stations and patients per station according to federal state Patients Stations for Patients per Stations HD/HF/HDF station p.m.p. Baden-Württemberg Bavaria Berlin Brandenburg Bremen Hamburg Hesse Mecklenburg-Western Lower Saxony North Rhine-Westphalia Rhineland-Palatine Saarland Saxony Saxony-Anhalt Schleswig-Holstein Thuringia Table 3. Prevalence of patients according to treatment modality according to federal state Patients Patients Prevalence Prevalence HD/HDF/HD CAPD/CCPD/IPD HD/HDF/HF dialysis p.m.p. p.m.p. Baden-Württemberg Bavaria Berlin Brandenburg Bremen Hamburg Hesse Mecklenburg-Western Lower Saxony North Rhine-Westphalia Rhineland-Palatinate Saarland Saxony Saxony-Anhalt Schleswig-Holstein Thuringia Total registered on the waiting list. This may include active and non-active (temporarily not transplantable) patients ( Eurotransplant: active waiting list: 8051 for kidney and 51 for kidney + pancreas). The reported number of transplants performed, i.e. 2429, again exceeds the Eurotransplant figure of 2016 (1784 cadaver kidneys, 103 kidney + pancreas and 129 live donor kidneys). The proportion of patients registered on the waiting list in relation to the number of patients who commenced dialysis differed markedly between states, i.e. 11.6% in Thuringia and 40.8% in Saarland. Return to dialysis after graft failure In 1996, 857 patients (822 adults, 31 children and four adolescents) were reported to have had graft failure. This complication markedly reduces the net increase in the number of transplanted patients. Incidence and prevalence of children and adolescents on ESRD therapy At the end of 1996, 861 children and adolescents were reported, 568 aged <15 and 293 aged years, yielding a prevalence of 11 p.m.p. A total of 141 children or adolescents (1.7 p.m.p.) commenced ESRD therapy in 1996, 90 children and 51 adolescents. The treatment modality was HD in 167 cases (82 children and 85 adolescents), peritoneal dialysis in 180 cases (141 children and 39 adolescents) and a kidney transplant in 514 cases ( 345 children and 169 adolescents). A total of 155 patients (116 children and 39 adoles-

4 1088 Table 4. Patients commencing ESRD (incidence) according to federal state U. Frei et al. Patients Start with Start with Children/ Incidence HD PD adolescents p.m.p. commencing RRT Baden-Württemberg Bavaria Berlin Brandenburg Bremen Hamburg Hesse Mecklenburg-Western Lower Saxony North Rhine-Westphalia Rhineland-Palatinate Saarland Saxony Saxony-Anhalt Schleswig-Holstein Thuringia Total Table 5. Transplantationa Patients on Transplanted New % Dialysis % Dialysis % incident on waiting list patients registered patients on patients waiting listb patients waiting list transplanted Baden-Württemberg Bavaria Berlin Brandenburg Bremen Hamburg Hesse Mecklenburg-Western Lower Saxony North Rhine-Westphalia Rhineland-Palatinate Saarland Saxony Saxony-Anhalt Schleswig-Holstein Thuringia Total aactive waiting list Eurotransplant (1996): 8051 patients (kidney) and 61 patients (kidney+pancreas). Kidney transplantations: 1784, kidney+pancreas 103; living kidney donors: 129 (Eurotransplant Annual Report, 1996). bpercentage of incident patients as a proportion of all patients on the waiting list for transplantation. cents) received a transplant in Twelve children died in this year. Number of deceased adult dialysis patients A total of 7119 dialysis patients were reported to have died in The total number of transplanted patients who died in 1996 is not available. Demography of ESRD therapy in Germany The number of patients treated by any method of dialysis increased between 1995 and 1996 by 1602 patients although the 1995 database is not completely comparable. This represents an increase of 3.8%. When one calculates the net increase, i.e. the inflow of dialysis patients (new patients and returns from transplantation) minus the outflow (deceased and transplanted

5 Annual Report of the German Renal Registry Fig. 1. Population pyramid of all patients on RRT. Fig. 3. Age distribution of patients on haemodialysis. Fig. 2. Population pyramid Germany (1995). Fig. 4. Age distribution of patients on peritoneal dialysis. patients), there remained an unexplained gap of >2000 identification data set. The age distribution of all cases. Therefore, calculations concerning the future registered patients is given in Figure 1. For comparison, development of the dialysis population relying on the the age distribution of the German general population actual database are not feasible. is added in Figure 2. Out of the registered patients ( ), (42%) were female compared with Patient survey 51% in the general population. This data set together with the German population census might give a suitable basis to calculate further population growth Between August 1996 and April 1998, individual provided there is no significant change with time patients were registered in our patient database concerning the proportion of patients commencing through the data trustee s office. This restricted initial dialysis with respect to primary disease and with respect registration contained date of birth, gender, primary to life expectancy. renal disease (coded according to the EDTA/ERA The distribution according to age and gender is code system), date of first ESRD treatment and current given for the different current treatment modalities, treatment modality. i.e. HD ( Figure 3), peritoneal dialysis ( Figure 4) and The following analysis is based on the limited patient transplant patients ( Figure 5). The information on the

6 1090 U. Frei et al. Fig. 5. Age distribution of transplanted patients. Fig. 7. Distribution of primary renal diseases in the incident population commenced ESRD therapy in 1997 (incidence population, Figure 7) was taken from this data set. It is interesting to note the percentage of 31% diabetics commencing ESRD therapy in 1997 compared with 21% in the prevalent population, pointing to their shorter life expectancy. The reverse is true for patients with glomerulonephritis, only 16% in the incidence population but 25% in the prevalence population. References Fig. 6. Distribution of primary renal diseases in the prevalent population. distribution of primary diseases in the prevalent population (Figure 6) as well in all patients who have 1. Frei U. Quality assurance in renal replacement therapy (RRT ) background of a developing German National Registry for RRT. QuaSi-Niere Task Group. Nephrol Dial Transplant 1995; 10: US Renal Data System, USRDS 1998 Annual Data Report, The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, April Available in paper and microfiche versions from National Technical Information Service (NTIS), Springfield, VA 3. US Renal Data System, USRDS 1997 Annual Data Report, The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, Bethesda, MD, April Available in paper and microfiche versions from National Technical Information Service (NTIS), Springfield, VA. (Published without reference tables or appendices in Am J Kidney Dis, 1997; 30 [Suppl 1]: S1 S213)