Better treatment urgently needed for end-stage kidney disease patients

24 May 2012

Data from a new patient survey by the European Kidney Patients’ Federation (CEAPIR) at the European Parliament, shows that a quarter of end-stage kidney disease patients in Europe do not feel involved in the decisions made about their own treatment choices[1].

Added to this, over one in five patients felt they were not sufficiently informed about their disease or the full range of renal replacement therapy (RRT) options available to them[1], to enable patients an active role in treatment decisions that may potentially impact their quality of life.

End-stage kidney disease affects approximately 2.7 million people worldwide, with 1.9 million people kept alive through dialysis — an estimated 20% of whom are living in the EU2 and costing as much as 2% of total healthcare budgets[3].

At the European parliamentary meeting held today in Brussels, hosted by Frieda Brepoels, MEP, CEAPIR launched their report, Unequal treatment for kidney patients in Europe, based on findings from the survey of nearly 4,000 patients with end-stage kidney disease. The report highlights a number of areas in which improvement is urgently needed to ensure patients are fully informed about the different treatment options available to them, and that a coordinated effort needs to be made to address the stark differences and inequality of available treatment options that exist across Europe in this regard.

  • Only 15% of patients felt they received training or education in managing their kidney disease in Germany as opposed to three quarters of patients in Finland[1].
  • Over half of patients in Italy had not, or were not sure if they had, discussed alternative treatment options, compared to Hungary where nearly eight out of 10 patients had discussed available treatment options[1].
  • In Belgium 79% of the patients felt they were involved in deciding about their treatment choice, whereas in Portugal almost 40% of patients said they were not involved at all[1].

“Today's discussions at the EU parliament mark a big step towards equipping patients with information and securing patient choice and equal access to renal care, both at a European and national scale,” said Mark Murphy, Vice President of CEAPIR.

“Starting treatment of end-stage kidney disease is a major life-altering event, and it is clear that more needs to be done to speed up efforts to improve the sharing of unbiased information on appropriate treatment options to help improve the experience and the different clinical outcomes for patients facing a life with this chronic condition that has a massive impact on quality of life."

End-stage kidney disease is diagnosed when a person has lost over 85% of their kidney function[4]. It is at this stage that renal replacement therapy (RRT) is required to replace the function of the kidneys by artificial means and remove toxins and excess fluid from the body. Due to a shortage of donated kidneys for transplantation and since some patients are not suitable for transplantation, dialysis is still the most common form of treatment and can be performed at home or in a dialysis centre or hospital.

It is before this point that patients should become involved in their treatment decision and make an informed choice following advice from their doctor on which treatment modality best suits their medical condition and lifestyle.

Speaking at the parliamentary presentation of the survey findings, Frieda Brepoels, MEP, commented, "Informing kidney patients and involving them in the decision making process around their treatment is a fundamental right and should be a necessary cornerstone of any European and local health initiative. Policy makers, healthcare professionals and patients themselves need to work together to make this happen."

CEAPIR is working to have the burden of end-stage renal disease on both the individual and society recognised and identified early – to prepare people through education and information to understand and choose treatment options which suits their unique circumstances. Its mission is to improve the quality of life of people with renal disease and its complications in Europe. The findings from ‘Unequal treatment for kidney patients in Europe’ are based on a 12 country patient survey, involving 3,867 respondents and carried out by CEAPIR during the second half of 2011. The survey was supported by Baxter Healthcare.

More information

About End-Stage Kidney Disease

End-stage kidney disease (ESKD), or kidney failure, is a chronic, irreversible condition that will ultimately lead to death without one of two interventions: dialysis or kidney transplant. Because transplantation is a limited option due to a shortage of donor organs, dialysis is by far the most common treatment.

Dialysis treatment can be performed at home or in a dialysis centre or hospital. There are two main forms of dialysis: haemodialysis (HD), in which the patient’s blood is pumped through an external filter, usually at a hospital or clinic and rarely at home; and peritoneal dialysis (PD), which is a home treatment that uses the lining of the abdominal cavity as a filter to cleanse the blood. People living with ESKD and their families should talk with their doctor and nurses to understand which dialysis treatment option best suits their condition and lifestyle.

It is estimated that in 2011 worldwide there were around 2.7 million people with ESKD with 1.9 million people kept alive through dialysis — an estimated 20% of whom are living in Europe.[2]

Furthermore, this figure is increasing each year and if the present trend is to continue, the number of people with chronic kidney disease (CKD) will double over the next decade[5].


1. CEAPIR. Unequal treatment for kidney patients in Europe. Unequal treatment for kidney patients in Europe. 2012, Feb.

2. Grassman A, Gioberge S, Moeller S, and Brown G. ESRD patients in 2004: global overview of patient numbers, treatment modalities and associated trends. Nephrol Dial Transplant. 2005, Dec;20(12):2587-93.

3. El Nahas AM, and Bello AK. Chronic kidney disease: the global challenge. The Lancet. 2005, Jan 1;365(9456):331-340.
4. The Renal Association.

5. EKHA. MEPs support a ‘wake-up call’ to address silent epidemic of chronic kidney disease in Europe. 2008.



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