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EDTA Registry Centre Survey, 1985 : Report from the European Dialysis and Transplant Association Registry*

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© 1987 European Dialysis and Transplant Association-European

Renal Association

Nephrology

Dialysis

Transplantation

Registry Report

EDTA Registry Centre Survey, 1985

Report from the European Dialysis and Transplant Association Registry*

* Members of the Registration Committee

M. Broyer Hopital Necker Enfants Malades, Paris, France

F. P. Brunner** Departement fur Innere Medizin, Universitat Basel, Switzerland H. Brynger Department of Surgery I, Sahlgrenska

Sjukhuset, Goteborg, Sweden W. Fassbinder Klinikum der Johann Wolfgang

Goethe-Universitat, Frankfurt am Main, Federal Republic of Germany

P. J. Guillou University Department of Surgery, St James's Hospital, Leeds, United Kingdom R. Oules Centre Hospitalier Regional et

Universitaire de Nimes, France **Chairman

G. Rizzoni Clinica Pediatrica dell'Universita, Ospedale Civile di Padova, Italy N. H. Selwood UK Transplant Service, Bristol,

United Kingdom

A. J. Wing St Thomas' Hospital, London United Kingdom

Director

S. Challah St Thomas' Hospital, London, United Kingdom

Assistant to Chairman

S. R. Dykes St Thomas' Hospital, London United Kingdom

Abstract. This paper summarises the information given

on the 1985 EDTA Registry centre questionnaire which was returned by 82% of 1959 known dialysis and trans-plant units in 33 European countries. Trends in the use of different forms of renal replacement therapy are dis-cussed, and attention drawn to the discrepancy between the EDTA centre and individual patient questionnaires as a source of demographic information on dialysis and transplantation. The results of special questions on dia-lyser re-use, dialysis equipment, AIDS, and hepatitis are presented, and information obtained from the special paediatric section of the centre questionnaire is also given.

Correspondence ami offprint requests to: Miss S. R. Dykes, European Dialysis and Transplant Association Registry, St Thomas' Hospital, London SEI 7EH, UK.

Key words: EDTA Registry; Centre questionnaire 1985;

Trends in RRT; Dialysis equipment; AIDS; Treatment of children

Introduction

The Registry of the European Dialysis and Transplant Association—European Renal Association (EDTA Registry) collects data from two sources: an individual

patient questionnaire and a centre questionnaire. The

centre questionnaire requests summary data on a unit's activity during the year, and also includes questions on topics of special interest. In contrast to the patient ques-tionnaire, the format of the centre questionnaire is varied from year to year around a basic core of questions. These core questions relate to the demography of dialysis and

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Table 1. Summary of centres known to the EDTA Registry in 1985. the

number per million population (PMP) and the proportion (per cent) returning the 1985 centre questionnaire. Population figures arc taken from the most recent World Bank Atlas [3]

Table 2. Summary of new patients accepted onto renal replacement

therapy during 1985 in Europe: based on data from the centre question-naire, supplemented by National Keymen. Both the absolute number of new patients and the acceptance rate per million population are given for each country Country Population in millions Known centres Known centres PMP % Replied Country Data available % centres New patients in 1985 Per million population Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep

Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry 21.265 7.527 9.856 8.960 0.665 15.464 5.110 46.172 61.205 4.902 55.089 16.701 9.888 10.692 0.240 3.533 4.172 57.033 2.624 3.620 0.365 21.347 14.411 4.151 36.918 10.202 38.523 8.337 6.572 7.068 48.266 56.327 22.955 620.160 7 27 59 38 4 27 11 31 331 27 216 54 51 13 1 5 29 392 7 3 5 5 50 17 54 40 199 35 38 10 19 67 87 1959 0.3 3.6 6.0 4.2 6.0 1.7 2.2 0.7 5.4 5.5 3.9 3.2 5.2 1.2 4.2 1.4 7.0 6.9 2.7 0.8 13.7 0.2 3.5 4.1 1.5 3.9 5.2 4.2 5.8 1.4 0.4 1.2 3.8 3.2 85.7 100.0 91.5 97.4 100.0 100.0 100.0 61.3 77.0 100.0 89.8 100.0 62.7 100.0 100.0 100.0 100.0 67.3 14.3 33.3 100.0 20.0 82.0 100.0 94.4 82.5 89.4 97.1 97.4 100.0 84.2 94.0 69.0 82.0 Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry 85.7 85.2 91.5 89.5 100.0 96.3 81.8 38.7 63.1 85.2 72.2 100.0 54.9 92.3 0 100.0 75.9 54.6 14.3 33.3 80.0 100.0 90.0 76.5 79.6 67.5 78.9 77.1 86.8 80.0 63.2 100.0 56.3 70.6 81 522 610 291 32 361 221 318 3 635 220 2 366 534 573 202 0 170 245 2 670 0 24 19 78 711 149 385 497 1830 518 385 139 240 2 427 742 21 195 3.8 69.4 61.9 32.5 48.1 23.3 43.2 6.9 59.4 44.9 42.9 32.0 57.9 18.9 0.0 48.1 58.7 46.8 0.0 6.6 52.1 3.7 49.3 35.9 10.4 48.7 47.5 62.1 58.6 19.7 5.0 43.1 32.3 34.2

transplantation and include items such as the number of new patients accepted for treatment and the number of grafts performed.

Demographic information published by the Registry is based on returns to both the individual patient and centre questionnaires [1,2]. These sources often yield different figures. The reasons for this are varied and include incom-plete registration of individual patients, a discrepancy between the number of centres which return centre and patient questionnaires, and some double reporting on the centre questionnaire. Demographic information based on returns to the centre questionnaire is usually available prior to that derived from the patient questionnaire.

Both patient and centre questionnaires are mailed at the end of each year. Centres which do not return the centre questionnaire by a specified date are sent a reminder, and if they fail to respond, an attempt is made to ascertain the missing information through National Keymen, who work closely with the Registry. Table 1

summarises centres known to the Registry in each of the 33 countries which report, the number per million popu-lation, and the proportion returning the 1985 centre ques-tionnaire. Units which returned the questionnaire did not necessarily provide all the information requested.

This article is based on data provided in the 1985 centre questionnaire, and the returns, shown in Table 1, have in some cases been supplemented by information from National Keymen (Tables 2-5).

Demography of Dialysis and Transplantation in

1985

Table 2 summarises numbers of new patients accepted onto renal replacement therapy during 1985. The Table shows the proportion of centres for which data were avail-able either from the centre questionnaire or through the

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Table 3. Total number ofpatients alive on different forms of renal replacement therapy

on 31 December 1985: based on data from the centre questionnaire, supplemented by information from National Keymen. Total number ofpatients alive on renal replace-ment therapy at the end of 1985 is shown as an absolute number and is also expressed per million population

477 Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry Patients on treatment at 31 Hosp. HD 235 1 391 2 234 881 122 878 467 927 13 835 265 9918 1676 1 101 453 12 229 858 11674 15 62 83 203 1870 199 1055 1823 7 872 823 1015 282 774 1923 2713 67 868 Home HD 3 47 106 50 0 2 61 0 1285 2 2157 0 95 0 0 22 48 763 0 0 5 0 155 4 0 0 290 75 169 0 0 2033 73 7445 IPD 0 2 8 1 0 5 43 97 121 6 150 9 0 38 0 1 65 100 0 0 0 0 0 5 50 1 50 22 1 1 79 52 79 986 December 1985 CAPD With 35 22 152 2 0 2 182 14 369 182 856 4 188 5 4 50 218 1250 0 0 0 0 440 24 15 3 545 231 276 15 12 2373 69 7538 fund. graft 0 461 111 23 0 316 217 120 3 028 785 2 964 588 136 161 0 329 286 1347 0 0 13 0 1 694 709 384 187 2 098 1 506 1057 0 104 5 773 225 25 288 Total 273 1923 3 277 957 122 1203 970 1 158 18 638 1 240 16045 2 277 1520 657 16 631 1475 15 134 15 62 101 203 4 159 941 1 504 2014 10 855 2 657 2518 298 969 12 154 3 159 109 125 Per mill. pop. 12.8 255.5 332.5 106.8 183.5 77.8 189.8 25.1 304.5 253.0 291.3 136.3 153.7 61.4 66.7 178.6 353.5 265.4 5.7 17.1 276.7 9.5 288.6 226.7 40.7 197.4 281.8 318.7 383.1 42.2 20.1 215.8 137.6 176.0

National Keymen. For centres which returned the centre questionnaire but failed to complete the question on new patients, the data have been treated as missing. This is not always correct, as some of these centres may indeed have had no patients commencing renal replacement therapy (RRT) in 1985. The numbers of new patients accepted onto treatment in 1985 are shown both as absolute numbers and expressed per million population [3]. The acceptance rate for new patients in 1985 exceeded 60 per million population in Austria, Belgium and Sweden.

The total number ofpatients alive on different forms of renal replacement therapy at the end of 1985 is shown by country in Table 3. The Table also gives the total number of patients alive on treatment per million population on 31 December 1985.

OTHER COUNTRIES S LARCEST COUNTRIES

'85

Fig. 1. Numbers ofpatients on haemodialysis 1981-1985, as reported on

the centre questionnaire. Results for five large Western European countries, the Federal Republic of Germany, France, Italy, Spain and the United Kingdom, have been shown separately.

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478

Table 4. Number of patients alive on special formsofdialysis/haemofiltralionon31 December 1985: based on data from the centre questionnaire

Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry Haemodialysis/haemofiltration Bicarb. HD 0 142 886 0 0 5 44 0 2 657 107 2 471 293 216 6 0 6 30 3 035 0 0 16 10 288 7 36 0 779 38 154 0 11 164 56 11457 Haemo-filtration 0 41 76 52 0 53 23 21 799 1 201 47 88 71 0 0 26 484 0 0 1 0 34 5 7 0 275 30 54 60 15 13 87 2564 Haemodia-filtration 21 20 79 6 0 32 36 36 324 0 163 0 38 0 0 0 128 383 0 0 7 0 9 4 86 0 189 6 26 69 20 85 40 1807 HD+Haemo-perfusion 25 3 1 9 14 6 1 18 103 0 6 25 5 20 0 0 25 43 0 0 0 0 6 0 2 0 212 1 17 0 0 0 56 598 Peritoneal dial. CCPD 0 1 23 1 0 0 0 0 14 0 40 0 0 0 0 0 0 10 0 0 0 0 1 0 I 1 19 3 2 0 0 138 3 257 PD + HD 1 13 1 0 0 0 2 1 33 0 5 0 0 10 0 0 0 4 0 0 0 0 0 0 9 0 4 0 1 0 9 11 7 111

The growth of the number of patients treated by haemodialysis in the years 1981-1985 is shown in Fig. 1. Results for the five largest countries reporting to the Registry, the Federal Republic of Germany, France, Italy, Spain and the United Kingdom, are shown separately.

Table 4 shows the number of patients on special forms of dialysis or haemofiltration on 31 December 1985. The number of patients alive on bicarbonate haemodialysis increased to 11 457 compared to 7534 reported on the 1984 centre questionnaire [2]. The numbers on haemofil-tration, haemodiafiltration and CCPD also increased. For the first time, the 1985 centre questionnaire requested information on patients treated by haemodialysis plus haemoperfusion, and the results are given in Table 4. The proportion of patients on haemodialysis treated by haemofiltration or bicarbonate haemodialysis increased

between 1982 and 1985 (Fig. 2). The rise was particularly notable for bicarbonate haemodialysis. Figure 3 shows that whereas the proportion of patients treated by home haemodialysis declined from 1981 to 1985, that on CAPD increased. This trend was analysed separately for five selected European countries, the United Kingdom, France, the Federal Republic of Germany, Italy and Spain, and the results are given in Fig. 4. The proportion of patients treated by CAPD between 1981 and 1985 rose most dramatically in the United Kingdom.

Transplant activity in 1985, based on data from the centre questionnaire, is shown in Table 5. Wherever possible, missing information was collected through National Keymen. The use of grafts from living donors contributed substantially to the high transplantation rate in Scandinavian countries: in Norway, 50% of all first grafts performed in 1985 came from that source.

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EDTA Registry Centre Survey. 1985 wI -a 4-1 d Z. 2 -HAEMOflLTRATKM BCAH8ONATE HD HOME HD C A ? D 12 81 £: not •waM«U«

Fig. 2. The proportion of patients on haemodialysis on 31 December of each of the years 1981 1985 treated by haemofiltration and bicarbonate haemodialysis. as reported on the centre questionnaire.

20-, 16- 12- 4-0-1 HOME HD

"4

I.* At

I

81 82 B3 M «S

Rg. 3. The proportion of all patients on dialysis on 31 December of each of the years 1981 -1985 treated by home haemodialysis. continuous ambulatory peritoneal dialysis and intermittent peritoneal dialysis, as reported on the centre questionnaire.

Re-use of Dialysers and Dialysis Equipment

Information on use and re-use of individual dialysers is collected on the patient questionnaire. However, the 1985 centre questionnaire included a question on re-use tech-niques, the results of which are summarised in Table 6. The proportion of centres which replied to the question,

s -I so 40 30- 20- 10-oJ 81 82 83 84 85

Fig. 4. The proportion of all dialysis patients treated by home

haemodi-alysis and continuous ambulatory peritoneal dihaemodi-alysis on 31 December of each of the years 1981 1985 as reported on the centre questionnaire in five selected European countries. UK, United Kingdom: F. France; FRG. Federal Republic of Germany: I. Italy: E. Spain.

.the proportion of these which reported re-use, and the techniques employed, are shown. Of the 78.9% of known centres which responded to the question, 11.7% reported re-use in 1985. Some centres indicated more than one re-use technique.

A question on dialysis equipment, included on the 1983 centre questionnaire, was repeated in 1985 [4]. The results of the latest enquiry are shown in Table 7. Results are given by country and include the proportion of centres which replied to the question, together with the numbers of the different types of dialysis machines. The proportion of these machines in homes is also indicated.

Transplantation

An important part of the centre questionnaire is devoted to transplant information (Table 5). A question on wait-ing lists for cadaver transplants included on the 1984 centre questionnaire was widely misunderstood, and a revised version was therefore included for a second time in 1985. The results are shown in Table 8, which gives the proportion of patients registered on a waiting list for a cadaver transplant in 1985 as reported by.dialysis centres. Although the differences between countries were remark-able, they did not have a clear relationship to the overall transplantation rate.

For the first time, the 1985 centre questionnaire included a question on the proportion of patients on waiting lists for a cadaver transplant who were highly sensitised ('most recent serum reacting with more than

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Table 5. Transplant activity in 1985 based on data from the centre questionnaire, supplemented by infor-mation from National Keymen. The Table gives the total number ofgrafts performed in 1985 as an absolute number and also expressed per million population (PMP). The total numbers ofgrafts performed in all years until the end of 1985 are shown in the extreme right-hand column

Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry Cadaver 1st graft 1 135 216 9 0 127 0 973 107 679 161 9 58 0 40 59 335 0 0 7 0 76 142 94 739 197 117 0 6 1059 35 5381 Pats. < I 5 0 10 21 0 0 2 5 0 67 2 65 7 0 1 0 3 10 14 0 0 0 0 20 1 5 2 36 3 2 0 0 105 0 381 Total Living Donor 1st CAD grafts graft

1 160 248 9 0 143 195 0 1160 134 833 170 13 64 0 52 75 355 0 0 7 0 289 99 147 99 825 262 203 0 7 1367 35 6952 0 7 40 0 0 0 9 56 61 7 24 4 9 7 0 20 30 17 0 0 2 0 15 76 1 0 49 57 7 0 58 178 33 767 Pats. < 1 5 0 2 5 0 0 0 0 1 8 0 5 0 1 1 0 5 1 2 0 0 0 0 3 2 1 0 10 8 1 0 0 7 1 64 Total LD grafts 0 7 42 0 0 I 13 57 63 7 36 4 18 8 0 20 39 19 0 0 2 0 34 80 4 0 55 65 10 0 58 188 36 866 Total* All grafts 1 167 290 9 0 144 208 57 1274 141 1157 174 31 72 0 72 114 374 0 0 9 0 323 179 151 99 956 331 213 0 65 1555 71 8237 PMP <0.1 22.2 29.4 1.0 0.0 9.3 40.7 1.2 20.8 28.8 21.0 10.4 3.1 6.7 0.0 20.4 27.3 6.6 0.0 0.0 24.7 0.0 22.4 43.1 4.1 9.7 24.8 39.7 32.4 0.0 1.3 27.6 3.1 13.3 Total grafts performed all years 1 1 196 3 354 28 0 1 120 2 376 168 7 422 1661 7067 1522 296 407 0 664 628 2 373 0 0 18 0 1433 746 296 3919 3781 2 285 0 467 13 575 447 57 250

•Data from centre questionnaire supplemented from other sources — Data unavailable

80% of a random donor panel'). Table 9 shows the number of patients on a waiting list for a cadaver trans-plant as reported by transtrans-plant centres, and the pro-portion of these highly sensitised. Overall, 10.8% of patients fell into this particular category, where it is difficult to find a suitable graft.

Cyclosporin (CyA) was used as prophylactic immuno-suppressioh after renal transplantation in approximately 50% of all transplant centres in 1983. In 1984, this figure increased to 60%, a proportion which did not change in 1985 (Fig. 5). Dosages of CyA used in the first week after transplantation have fallen within the last year (Fig. 6). An initial dosage of 14-15 mg/kg per day was by far the most frequently reported in 1984. and less than 10 mg/kg

per day was given in only a small proportion of centres. In contrastjn 1985, an initial dosage of 10-11 mg/kg per day was as frequently used as the former 'standard' dosage of 14-15 mg/kg per day, and more than one-third of all transplant centres reported initial dosages below lOmg/ kg per day.

Figure 7 shows the regimens most commonly used dur-ing the first week after graftdur-ing by units which reported use of cyclosporin in 1985. Only 5% of these centres used CyA alone, i.e. without any other immunosuppressive drug. By far the most common regime was a combination of CyA with steroids, used by 59% of all transplant centres. CyA was not used in the first week in 17% of those units reporting use of the drug in 1985, which suggests

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Table 6. The proportion of centres which reported re-using dialysers in 1985. as reported on the centre questionnaire. The Table gives the number of centres which replied to this question, and the technique used by centres which reported re-use

Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry Re-use of dialysers % centres replied 85.7 88.9 93.2 92.1 100.0 96.3 100.0 54.8 74.0 . 92.6 85.7 98.2 58.8 92.3 100.0 100.0 89.7 63.5 14.3 33.3 100.0 100.0 82.0 100.0 90.7 77.5 87.4 94.3 94.7 100.0 84.2 88.1 67.8 78.9 Centres re-using dial. % 0 0 14.6 91.4 0 3.9 9.1 11.8 3.3 0 13.0 0 0 8.3 0 0 11.5 5.2 0 0 20.0 0 0 11.8 71.4 32.3 6.9 0 19.4 0 0 33.9 1.7 11.7 n 0 0 8 32 0 1 1 2 8 0 24 0 0 1 0 0 3 13 0 0 1 0 0 2 35 10 12 0 7 0 0 20 1 181

Techniques used (« centres)

Manual 0 0 2 21 0 0 0 I 4 0 18 0 0 0 0 0 2 8 0 0 0 0 0 2 34 7 2 0 5 0 0 14 0 120 Re-use cycle on proportionating machine 0 0 3 3 0 0 0 0 0 0 1 0 0 1 0 0 0 0 0 0 1 0 0 0 5 0 0 0 2 0 0 5 0 21 Separate automatic machine 0 0 4 6 0 I 1 0 4 0 3 0 0 0 0 0 1 3 0 0 0 0 0 0 0 7 9 0 1 0 0 7 0 47

that they either restricted its use for special patients or started the drug after the first week post-transplant, probably to avoid nephrotoxic effects in the early and vulnerable postoperative period. The use of 'triple drug therapy' (combination of CyA, azathioprineand steroids) was reported by 15% of centres as the most common form of immunosuppression during the first week after renal transplantation in 1985. Almost half (48%) of centres reported use of 'triple drug therapy' for prophylactic immunosuppression in one or more patients during 1985.

AIDS and Hepatitis

So far, few reports exist about infection with human immunodeficiency virus (HTLV-III/LAV) in patients on

renal replacement therapy. On the 1985 centre question-naire, an enquiry was made about current policies in test-ing for HTLV-III/LAV antibodies and cases of acquired immune deficiency syndrome (AIDS). Testing for HTLV-III/LAV antibodies was reported in 'most or all patients' in 30% of all centres which answered this enquiry, while in 13%, only 'selected patients' were tested (Table 10). No testing for HTLV-III/LAV antibodies was reported by 57% of units. Practice on testing for anti-bodies differed markedly from country to country and was not obviously influenced by the number of deaths attributed to AIDS in patients with end-stage renal failure (Table 10). In Sweden, where no AIDS deaths were reported to the Registry in patients with end-stage renal failure, two-thirds of all centres tested for anti-HTLV-III/LAV, whereas in Italy, where two AIDS deaths were

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482

Table 7. Summary of dialysis equipment in use in Europe at the end of 1985. The numbers of haemodialysis. haemofiltration and peritoneal dialysis machines are shown, together with the proportion of these in homes

Country-Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry Centres replied % 86 85 93 87 100 93 91 52 75 96 87 91 59 92 100 100 97 64 14 33 100 100 80 100 93 80 86 94 95 100 63 85 64 78 Haemodialysis machines VCU n 9 180 415 96 0 27 49 40 2880 37 1921 9 70 2 0 15 161 881 3 2 5 0 273 69 66 169 935 75 167 26 29 842 288 9741 BIC n 0 67 237 8 0 6 23 2 1332 55 879 57 24 2 0 2 40 1122 0 2 9 2 157 10 23 14 359 28 85 0 2 191 24 4762 Vary Na » 0 265 262 142 0 36 32 43 4 549 59 1682 270 159 18 0 2 130 2 702 3 0 5 0 183 52 117 107 1242 149 154 31 42 1008 369 13813 Total n 80 328 705 208 25 221 214 163 6 729 206 4 067 409 311 93 7 85 317 5 003 6 10 44 21 658 178 355 516 2 900 419 523 104 123 3364 1899 31072 Home % 3.8 14.6 8.2 0 0 0.9 23.8 0 16.9 1.0 43.6 0 0 0 0 28.2 14.2 14.5 0 0 11.4 0 7.3 2.8 0 0 9.3 11.2 28.9 0 0 57.4 2.4 20.5 Haemofiltration machines n 0 20 94 9 0 8 7 11 459 2 114 15 2 1 0 0 I 209 0 0 6 0 26 7 3 0 78 20 15 0 2 23 24 1156 Home % 0 0 9.6 0 0 0 0 0 3.5 0 12.3 0 0 0 0 0 0 0.5 0 0 0 0 0 0 0 0 0 0 0 0 0 0 4.2 3.6 Peritoneal dialysis machines n 6 5 17 2 0 4 31 6 192 5 202 16 12 7 0 5 4 357 0 1 1 0 21 1 14 9 104 38 70 2 1 185 8 1326 Home % 16.7 20.0 17.7 0 0 0 22.6 0 7.8 0 15.4 37.5 0 0 0 0 0 5.0 0 0 0 0 9.5 0 7.1 0 0 2.6 2.9 0 0 17.3 12.5 9.1 Total n 86 353 816 219 25 233 252 180 7 380 213 4 383 440 325 101 7 90 322 5 569 6 11 51 21 705 186 372 525 3082 477 608 106 126 3572 1931 33 554 Home % 4.7 13.9 8.6 0 0 0.9 23.0 0 15.9 0.9 41.5 1.4 0 0 0 26.7 14.0 13.3 0 0 9.8 0 7.1 2.7 0.1 0 8.7 10.1 25.2 0 0 54.9 2.4 19.5

VCU. volume controlled ultrafiltration monitor; BIC. bicarbonate dialysate module: Vary Na, variable dialysate sodium concentration

reported, only one-third of centres reported testing. In Norway, unlike Sweden, few 'selected' patients were tested in 1985.

Figure 8 shows the number of new cases of hepatitis B diagnosed in the years 1980-1985 in both patients and staff, expressed per thousand patients on hospital haemo-dialysis at the end of each year. The ratio in patients declined rapidly from about 44 per thousand in 1980 to 24 per thousand in 1982, and subsequently remained stable. A decline in the ratio for staff was also observed in this period. However, large variations in the frequency of hepatitis were still found between countries (Table 11). The ratio of cases of hepatitis B per thousand alive on hospital haemodialysis in 1985 exceeded 100 in Czecho-slovakia, Egypt, the German Democratic Republic, and

Tunisia. Similarly, high rates for cases among staff were observed in Algeria, the German Democratic Republic, and Poland.

Paediatric Information

Each year, the centre questionnaire contains a section requesting information on the treatment of children by dialysis and transplantation. Table 12 shows new paedia-tric patients accepted for renal replacement therapy in 1985 by type of centre, self-defined as specialised for pae-diatric patients or not, on the centre questionnaire. The total number of new patients include those taken on from foreign countries who were not included in the calculation

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Table 8. Proportion of dialysis patients on a waiting list for cadaver transplant as reported by dialysis centres on the 1985 centre question-naire

Country' Per cent patients Country patients Per cent no-ctrrt camras 40-Algeria 22.0 Austria 30.6 Belgium 13.2 Bulgaria 20.8 Cyprus 38.5 Czechoslovakia 52.8 Denmark 25.4 Egypt 1.4 Fed. Rep Germany 20.3 Finland 45.3 France 15.4 German Dem Rep 28.4 Greece 16.8 Hungary 58.1 Iceland 0 Ireland 46.0 Israel 16.8 Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry 17.7 6.7 0 25.8 8.6 31.0 41.4 65.8 25.1 43.9 25.9 21.7 21.8 35.1 41.5 32.4 25.6

Fig. 5. The proportion of transplant centres which reported use of cyclosporin for prophylactic immunosuppression on the centre ques-tionnaire in 1983.1984 and 1985. 3 0 -Per cent 20-centres

10-Table 9. The number of patients on a waiting list for a cadaver trans-plant, and the proportion highly sensitised as reported by transplant units on the 1985 centre questionnaire

4-5 10-11 12-13 14-B 16-17

mg/kg/day

Fig. 6. Frequency distribution of oral dose of cyclosporin 'most com-monly used' in the first week post-transplant, as reported by transplant centres on the 1984 and 1985 centre questionnaire.

Country Number on waiting list

Per cent highly sensitised Algeria 32 Austria 515 Belgium 378 Bulgaria 486 Cyprus 0 Czechoslovakia 530 Denmark 84 Egypt 3 Fed Rep Germany 4 054 Finland 186 France 2 347 German Dem Rep 447 Greece 110 Hungary 464 Iceland 0 Ireland 147 Israel 127 Italy 1928 Lebanon 0 Libya 0 Luxembourg 22 Morocco 0 Netherlands 659 Norway 110 Poland 1448 Portugal 677 Spain 4 284 Sweden 358 Switzerland 173 Tunisia 13 Turkey 326 United Kingdom 2 675 Yugoslavia 1089 Total Registry 23 672 25.0 15.2 9.3 0.8 0 10.6 23.8 0 4.7 22.0 17.9 21.0 8.2 11.2 0 19.1 14.2 9.2 0 0 4.6 0 19.9 11.8 7.5 4.7 10.7 10.3 19.8 0 3.1 13.5 12.4 10.8

CyA not used (17V

CyA 'Other CyA • steroids

• All (15U

CyA alone (51)

CyA • steroids (591)

Fig. 7. Regimen most commonly used for prophylactic immunosuppres-sion during the first week after transplant by centres which reported use of cyclosporin (CyA) on the 1985 centre questionnaire. Aza, azathio-prine. Per 1000 pats, on Hosp. HO 302 0 -Patients Staff 1980 1981 1982 1983 198* 1985 Year

Fig. 8. New cases of hepatitis B diagnosed in patients and staffin each of the years 1980-1985, expressed per thousand patients on hospital hae-modialysis at the end of each year.

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Table 10. Summary of information on AIDS provided on the 1985 centre questionnaire. The Table shows practice of centres in testing for HTLV-III/LAV antibodies by country. Cases of AIDS and deaths from the disease in patients on renal replacement therapy are also shown. The proportion of centres which responded to the section on AIDS is given by country

Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry

Testing for AIDS (% centres)

No testing 100 16 46 93 100 100 50 100 39 62 33 94 28 100 100 100 78 59 100 100 40 100 83 82 88 36 60 24 53 50 85 70 85 57 In selected patients 0 8 6 0 0 0 0 0 18 12 15 6 3 0 0 0 19 9 0 0 20 0 10 18 0 9 31 3 17 13 0 22 9 13 In most or all patients 0 76 48 7 0 0 50 0 43 27 52 0 69 0 0 0 4 32 0 0 40 0 8 0 12 55 10 74 31 38 15 8 6 30 Cases of AIDS (n) Suspected cases 0 8 3 0 0 0 0 0 22 0 31 5 0 0 0 0 6 13 0 0 0 0 1 0 0 0 11 0 2 0 0 9 16 127 Deaths 0 0 0 0 0 0 0 0 2 0 4 0 0 0 0 0 0 2 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 10 % Centres replied 71.4 92.6 89.8 71.1 75.0 88.9 90.9 38.7 74.6 96.3 83.8 96.3 54.9 76.9 100.0 100.0 93.1 62.5 14.3 33.3 100.0 100.0 78.0 100.0 90.7 82.5 81.9 97.1 94.7 80.0 68.4 88.1 62.1 76.4

of acceptance rate per million child population (pmcp) given in the Table.

Table 13 shows the numbers of patients aged less than 15 years alive on any form of dialysis/haemofiltration at the end of 1985 by type of centre. The proportion of these children treated in specialised paediatric centres (self-defined on the centre questionnaire) is given.

Conclusions

In recent years the EDTA centre questionnaire has become an increasingly important source of demographic information about renal replacement therapy. It is poss-ible to collect and analyse these questionnaires long before data from the individual patient questionnaire

becomes available. Figures from the two sources often vary, for reasons outlined above, with centre question-naire data producing slightly higher numbers for patients on renal replacement therapy than the patient question-naire.

Active steps are taken to ascertain information on units which do not return the centre questionnaire, through the National Keymen. However, even these measures do not produce complete coverage, and the shortfall in data varies from country to country (Table 1). It is in the mutual interest of the renal care community at large to provide as comprehensive data as possible to the EDTA Registry, and the Registration Committee therefore wel-comes suggestions on how completeness and quality of information may be improved.

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Table 11. Hepatitis diagnosed in patients and staffin 1985 as reported on the centre questionnaire. The numbers of cases of hepatitis Bare shown in absolute numbers and also expressed per thousand patients on hospital haemodialysis at the end of the year. Numbers of cases of hepatitis A and hepatitis non-A non-B are also shown

Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry Patients HepB 18 44 38 16 2 105 0 96 68 0 89 184 9 17 0 0 4 144 0 1 4 3 3 0 89 51 96 0 1 30 54 6 212 1384 Cases/1000 pats on Hosp. HD 76.6 33.0 17.8 18.2 16.4 119.6 0 103.6 5.0 0 •9.1 109.8 8.2 37.5 0 0 4.7 12.5 0 16.1 48.2 32.3 1.9 0 85.4 28.0 13.1 0 1.1 106.4 79.6 3.1 78.1 21.0 Hep A 0 0 2 0 0 7 0 1 2 1 4 4 2 0 0 0 1 0 0 0 0 0 2 0 0 2 3 0 0 0 2 0 21 54 Hep non-A non-B 1 9 21 0 2 15 0 0 82 1 133 31 16 7 0 0 34 155 0 0 0 0 9 3 4 43 139 7 8 1 0 18 5 744 Stan-Hep B 5 0 2 4 0 13 0 5 4 0 2 62 1 9 0 0 0 15 0 1 0 0 0 0 38 22 14 0 0 2 6 1 30 236 Cases/1000 pats on Hosp. HD 21.3 0 0.9 4.5 0 14.8 0 5.4 0.3 0 2.0 37.0 0.9 19.9 0 0 0 1.3 0 16.1 0 0 0 • 0 36.5 12.1 1.9 0 0 7.1 8.8 0.5 11.1 3.6 Hep A 0 0 3 I 0 0 0 0 0 0 0 0 0 0 0 0 0 2 0 0 0 0 0 0 2 1 2 0 0 0 0 0 0 11 Hep non-A non-B 0 0 2 1 0 ! 0 1 5 0 4 5 0 1 0 0 1 9 0 0 0 0 0 0 1 0 5 0 1 0 0 0 1 38

Table 12. Number of new paediatric patients accepted onto renal replacement therapy in specialised (with number of specialised units shown in brackets) and non-specialised centres in 1985. The Table is based on information provided on the 1985 centre questionnaire and also shows the total number of new patients per million child population (PMCP). The number of new patients from foreign countries is shown separately and was not included in the calculation of the acceptance rate PMCP

Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt Patients in specialised centres (n centres) 10(2) 0(0) 13(4) 3(1) 0(0) 5(2) 0(0) 0(0) Patients in non-specialised centres I 6 0 0 0 2 9 8 Total n patients 11 6 13 3 0 7 9 8 Patients PMCP 1.2 3.5 5.2 1.0 0 1.9 9.0 0.5 Foreign new patients 0 1 3 1 0 0 0 0

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Table 12. (Continued)

Country

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry Patients in specialised centres (n centres) 45(14) 2(1) 79(17) 14(4) 3(1) 6(1) 0(0) 7(1) 5(3) 26(9) 0(0) 0(0) 0(0) 0(0) 21(4) 0(0) 27(7) 4(2) 20(8) 0(1) 6(3) 0(0) 0(1) 59(9) 11(2) 366(97) Patients in non-specialised centres 8 1 11 2 2 6 0 0 5 28 2 0 0 1 0 4 1 3 15 12 1 0 10 18 9 165 Total n patients 53 3 90 16 5 12 0 7 10 54 2 0 0 1 21 4 28 7 35 12 7 0 10 77 20 531 Patients PMCP 5.0 3.1 6.3 4.7 2.3 4.7 0 5.6 7.2 4.0 1.9 0 0 0.1 6.4 4.6 3.0 2.9 3.5 7.7 6.3 0 0.5 6.5 3.4 Foreign new patients 4 0 14 1 0 1 0 1 0 5 0 0 0 0 2 0 0 0 0 0 0 0 0 3 1 37

Table 13. The number of children on dialysis on 31 December 1985 shown by type of centre. The Table is based on information provided on the 1985 centre questionnaire and also shows the proportion of children dialysed in specialised paediatric centres

Country Algeria Austria Belgium Bulgaria Cyprus Czechoslovakia Denmark Egypt

Fed Rep Germany Finland

France

German Dem Rep Greece Hungary Iceland Ireland Israel Italy Lebanon Libya Luxembourg

Children on dialysis on 31 December 1985

Specialised centres 10 0 24 3 0 3 0 0 77 1 183 33 2 3 0 1 13 60 0 0 0 1 Non-specialised centres 5 6 2 3 0 2 9 7 14 2 33 2 4 7 2 J 6 36 0 0 1 Total 15 6 26 6 0 5 9 7 91 3 216 35 6 10 2 4 19 96 0 0 1 % Treated in specialised centres 67 0 92 50 0 60 0 0 85 33 85 94 33 30 0 25 68 63 0 0 0

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Table 13. {Continued) Country Morocco Netherlands Norway Poland Portugal Spain Sweden Switzerland Tunisia Turkey United Kingdom Yugoslavia Total Registry

Children on dialysis on 31 December 1985

Specialised centres 0 41 0 39 19 43 0 14 0 4 96 16 685 Non-specialised centres 0 0 1 4 9 32 3 1 1 10 31 13 249 Total 0 41 1 43 28 75 3 15 1 14 127 29 934 % Treated in specialised centres 0 100 0 91 68 57 0 93 0 29 76 55 73

This paper has summarised information obtained on the 1985 EDTA centre questionnaire, and discussed trends in renal replacement therapy: the growth in numbers treated by haemodialysis (including the special forms), the declining importance of home haemodialysis, the growth of CAPD and the remarkable transplantation rates achieved by some countries.

Where possible, comparisons have been made between countries. Interpretation of the trends and differences demonstrated is difficult because of the many economic, social and medical factors that influence the pattern of renal replacement services offered in different parts of Europe. The data are presented in order that individual

countries may review their own performance and perhaps learn from different patterns of care offered elsewhere.

References

1. Broyer M, Brunner FP. Brynger H et al. Demography of dialysis and transplantation in Europe. 1984. Nephrol Dial Transplant 1986; 1:

1-8

2. Brunner FP, Broyer M, Brynger H et al. Combined report on regular dialysis and transplantation in Europe, XV, 1984. Proc Eur Dial

Transplant Assoc 1985; 22: 3-53

3. The World Bank Atlas 1986. The World Bank. Washington, DC 4. Kramer P, Broyer M, Brunner FP, et al. Combined report on regular

dialysis and transplantation in Europe, XIV, 1983. Proc Eur Dial

Figure

Table 1. Summary of centres known to the EDTA Registry in 1985. the number per million population (PMP) and the proportion (per cent) returning the 1985 centre questionnaire
Table 3. Total number ofpatients alive on different forms of renal replacement therapy on 31 December 1985: based on data from the centre questionnaire, supplemented by information from National Keymen
Table 4. Number of patients alive on special formsofdialysis/haemofiltralionon31 December 1985:
Fig. 4. The proportion of all dialysis patients treated by home haemodi- haemodi-alysis and continuous ambulatory peritoneal dihaemodi-alysis on 31 December of each of the years 1981 1985 as reported on the centre questionnaire in five selected European co
+7

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