Better treatment urgently needed for end-stage kidney disease
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.
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, 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.
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.
- 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.
- 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.
“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. 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
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.
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.
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,
3. El Nahas AM, and Bello AK. Chronic kidney disease: the global
challenge. The Lancet. 2005, Jan 1;365(9456):331-340.
5. EKHA. MEPs support a ‘wake-up call’ to address silent epidemic
of chronic kidney disease in Europe. 2008.