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I N T E R V I E W |
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To explore improvements in dialysis and the treatment of end-stage renal failure in Europe, the Membrana GmbH
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invited Gerard Boekhoff, vice-president of the European Kidney Patients' Federation, from the Netherlands and the French nephrologist Prof. François Berthoux to Wuppertal, Germany. The interview took place on March 17, 2000; Gerard Boekhoff asked the questions.
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 Gerard Boekhoff:
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Born in the Netherlands in 1962, Gerard Boekhoff suffered renal failure at the age of three. He was on haemodialysis between 1978 and 1982 when he received a transplant. Today he is a medical sociologist, manager of a non-profit organisation of renal patients in Holland and vice-president of CEAPIR, the European Kidney Patient's Federation. Gerard Boekhoff is also editor of the European Renal Info, which is written primarily for physicians, politicians and journalists and appears in five languages (English, French, German, Italian and Spanish). The Info magazine was first published in 1997.
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 Prof. François Berthoux:
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Born in France in 1942, Dr. Berthoux studied medicine in Dijon and Lyon. After a research fellowship in Boston (USA) he became assistant professor in the Renal Department at the Lyon University Hospital. In 1976 he was appointed professor in the Department of Nephrology, Dialysis and Renal Transplantation (NDT) at the newly erected university hospital at Saint Etienne, the Hôpital Nord-CHU. He has chaired that department since 1978. From 1996 to 1999 he served as President of the European Renal Association (ERA). This year he is President of the ERA Congress to be held at Nice, France, in September.
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The interview was summarised by Petra Moll.
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François Berthoux, why did you enter the field of nephrology?
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Partly because I had kidney problems myself when I was 17 years old. In my work as a nephrologist this experience has always been an advantage. You know exactly what you are facing and what the alternatives are.
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You became Professor of Nephrology in 1976. A lot has happened in nephrology from that time down to the present. What do you see as the most striking advances in that period? In transplantation, for example?
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In 1979 we started renal transplantation with classical conventional treatment, for instance steroids plus azathioprine. The results were OK, but the graft survival rate was only 65 % in the first year. In 1983 the drug cyclosporin was introduced.
We started using it in August 1984; I remember that very well. Cyclosporin changed prospects dramatically. Now 90 % of the grafts are functioning during the first year, 75 % of the patients live five years with their transplant and 60% for ten years and longer. With improved graft survival, mortality has declined significantly. Now our only major problem is the shortage of donor organs.
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I would like to talk about the improvements in dialysis between 1976 and the year 2000. At the end of the seventies, for instance, continuous ambulatory peritoneal dialysis (CAPD) was introduced.
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Yes, CAPD was a real revolution. You infuse two litres into the peritoneal cavity and wait four or five hours to establish equilibrium between the blood level and the dialysate level. The other positive aspect of CAPD is the patient's independence from the hospital. CAPD is a treatment modality outside the hospital. You perform it at home and even at work.
However, peritoneal dialysis reaches the limits of its use after 4 or 5 years. First of all, because the patient's residual renal function is virtually nil. The capacity of the peritoneal membrane decreases, too, over time.
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In France you recommend self-care, or autonomous, in centre haemodialysis.
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Yes, in France self-care is very popular for chronic haemodialysis because it has been the only way to be able to accommodate every patient in need. Currently more than 22,000 patients require dialysis therapy each year. And the number is increasing by about 7.5 % a year.
The real change, however, as regards haemodialysis is a technique called continuous venovenous hemodiafiltration (CVVHDF). It allows us to treat very unstable patients even in septic shock. That is a real revolution. Hemodiafiltration (HDF) combines the classic dialysis process and hemofiltration in association with the convection process. It requires mainly an intravenous infusion of 3 l dialysate/hour in a predilution technique with the simultaneous subtraction of 3 l/hour in a postdilution way to maintain the balance. It is used for acute and chronic dialysis.
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What about the treatment for anaemia associated with chronic renal failure?
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The appearance of the drug erythropoietin triggered a tremendous change for the patient in regard to quality of life. The drug is indicated to elevate or maintain the red blood cell level and to decrease the need for transfusions. Living with 7 g/dl of haemoglobin is not the same as with 12 grams per decilitre. You feel far better at the latter level.
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What do you think about daily haemodialysis? Do you have many patients on a daily treatment regimen?
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No, I am restrictive. Because the constraint for patients on dialysis three times a week is already very high, both psychologically and physically. Moreover, these patients undergo dialysis for years and even decades. Additionally, the costs would be huge. The treatment for patients with end-stage renal failure in France costs about 1.6 billion Euro annually for only 0.034% of the French population. Suggesting daily dialysis would double the cost. In the United States, daily dialysis is being practised.
I think it is better to have a donated kidney than daily dialysis. I can only imagine daily dialysis for a few months just to improve a very poor condition of the patient. Then I would urge the family or the spouse to seek a kidney transplant.
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In the US, they sometimes transplant two kidneys. What do you think about dual transplantation?
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One kidney is enough to live well. Apart from a few exceptions, we are not doing dual transplantations on adults in Europe. We transplant one properly functioning kidney that corresponds to the very strict European quality standards for donated organs.
In the US they accept kidneys with very poor function and transplant two of them. For instance, you have a cadaveric donor with an overall function of 40% of normal, that is one kidney at 20 % function. No need to dialyse any more. But I do not think it is fair.
In my opinion, it is more important to match the donor to the recipient. That is, not to give a 70 years old donor to young man or woman but give it to a recipient aged around 70. And for this recipient the kidney is good, which it would not be for the young person.
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The dialysis outcome quality initiative (DOQI) developed guidelines to prevent under-dialysis. What do you think about them?
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Laying down rules is a very important step. Especially in the United States, patients tend to be under-dialysed; they had and still have poor results, and mortality is high compared to Europe. Many decisions on dialysis treatment are money-driven: instead of operating two shifts they do three and overnight dialysis. In fact, economics is a very poor basis for planning therapy. So I think setting standards is a good way to ensure optimal care for the patients.
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If one is on dialysis, the prospect of a transplant gives hope for the future. At that time, it is very important to have the idea that after the transplant everything will be back to normal again. That is not always the case, but you need that hope.
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It is very difficult to be tethered to a machine. To stay on dialysis without any hope of a transplant is terrible. Unless you are 75 and expect to live another five or ten years. Today you can live 30 years on dialysis. You can adapt to it, but for most patients it's not a good life. Furthermore, after so many years on dialysis you encounter a lot of additional problems and especially bone problems. But with a transplant, it is no problem to live a long and very good life, with quite normal life quality.
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Do you offer psychological or social help for patients on dialysis?
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Yes, but not enough. We do need more. It is important to have somebody to talk to even if he cannot give you the answers you want. If you are a chronic patient you feel and you are alone. Even if you have a partner or a family.
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Do you also have patients on dialysis that say: 'I want to stop?'
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Yes. Although these might be people with psychological problems. So they have to be evaluated very carefully, and in my department we persuade them to continue. But we have also patients in such poor condition that we stop dialysis if the patient wishes to do so. It is a very difficult decision. It would help to have a kind of commission for that with lawyers, ethical and religious people, doctors, nurses.
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What do you think about kidney patients' organisations?
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I think very positively about patients‘ organisations. On the one hand, they can give advice to patients with renal failure. In addition, they can do lobbying. This becomes more and more important since in Europe, the medical administrations and insurance companies aim to spend less money on patients with chronic diseases like end-stage renal failure. However, the number of patients with end-stage renal failure is increasing. So we need more money, not less.
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You were President of the European Renal Association (ERA) from 1996 to September 1999. Why are you engaged in that organisation?
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Because there needs to be an organisation at a European level in order to finalise many things. The problems are the same in every EU country. We need to campaign in the political arena.
Also, we are overwhelmed by the United States: they want to transfer their scientific power to Europe. It seems to be fashionable among nephrologists to attend meetings and congresses to the US. Going to meetings of the American Society of Nephrology is en vogue. To my mind, this trend is a big mistake. If we want Europe to be a strong we have to show our ability to do good work on our own. So we should demonstrate that we are able to organise high quality scientific congresses in Europe, and that we can compete with the United States. Of course, the American Society of Nephrology has a very good journal, but we should enable ourselves to do something like that in Europe.
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If we look at end-stage renal disease and dialysis, what do you foresee happening in the near future?
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We still have to stick to the machine. I do not expect many changes: I hope for them, but I don't see them. You will certainly be dealing with more efficient dialysis equipment, sterile dialysate and so on. But there will be no change in the life of the patient unless we opt completely for transplantation.
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What would be your dreams for the far future as the treatment of end-stage renal failure (ESRF) is concerned?
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Not to need chronic dialysis any longer, but to transplant every ESRF patient as soon as possible. But currently transplantation is decreasing, and the population is ageing.
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