By Brian Johnson & Martin Banks – 27th April 2012 It goes without saying, that chronic kidney disease and its treatment have an enormous impact on patients’ lives; it also entails significant socio-economic costs EU member states are spending around two per cent of their total healthcare budget on dialysis treatment, yet dialysis patients make up only around 0.2 per cent of the population. National governments may not be spending their budgets wisely

CEAPIR vice president mark Murphy

a patient survey, like the one being discussed today, is one way of involving patients and allows us to focus on areas of action within the heath service

CEAPIR vice president Lars Engberg

Belgian MEP Frieda Brepoels has called for more to be done to enhance patient choice and access to treatment for people suffering from kidney disease.Brepoels, speaking at an event in the European parliament on Thursday, described the disease as a “silent epidemic” and urged EU and national policymakers as well as healthcare professionals to “work together” to make sure that those suffering from end-stage kidney disease receive, “the right treatment at the right time”.she told the debate, jointly organised by the Parliament Magazine and the European kidney patients’ federation (CEAPIR), that incidence of the disease, which can have a severely debilitating effect on sufferers, is set to double over the next decade.Information and treatment choiceThe roundtable debate heard evidence from several speakers involved in the production of a major Europe-wide survey highlighting widespread differences in the provision of information and treatment choice for kidney patients.the CEAPIR survey, entitled, ‘Unequal treatment for kidney patients in Europe’, found that a quarter of end-stage kidney disease patients did not feel involved in the decisions made about their treatment choices.It also found that there were stark differences and inequalities of treatment options across the 12 European countries that took part, with only 15 per cent of German patients surveyed saying they felt that they had received proper training or education on managing the disease against three quarters of those surveyed in Finland.Brepoels, a member of the parliament’s public health and food safety committee, said, “It goes without saying, that chronic kidney disease and its treatment have an enormous impact on patients’ lives; it also entails significant socio-economic costs.”Like many other chronic diseases, kidney disease is treatable, but not curable. unfortunately, we see though that many patients are only referred to a kidney specialist when confronted with kidney failure and requiring dialysis. At this stage preventive measures are no longer effective and a lot of vulnerable time is lost.”Brepoels added, “Chronic kidney disease is a silent epidemic; in many cases affected persons are not aware of their condition because the disease often develops without symptoms.”Treatment optionsTransplantation is seen as the ‘gold standard’ for treating the disease and is recognised as the best option in terms of quality of life and patient survival as well as the most cost-effective treatment for national healthcare authorities.however because of a shortage of donor organs and suitable living donors, kidney dialysis is still the most commonly used treatment.however, despite the availability of a home treatment procedure called peritoneal dialysis (PD) almost 90 per cent of patients currently use Haemodialysis (HD), usually at a hospital or clinic.from a patient perspective, PD is seen as more flexible allowing patients to take a greater role in managing their care.The need for a survey on patient choice“Patient involvement has a positive effect on quality of life and patient satisfaction,” CEAPIR vice president Lars Engberg told participants at the event.”Patients have a different perspective, so their involvement can affect their clinical outcome and help complement the knowledge of health professionals.”"A patient survey, like the one being discussed today, is one way of involving patients and allows us to focus on areas of action within the heath service”.Engberg added that polls such as the recent CEAPIR survey can especially benefit patients as the decisions they make on their treatment could have a “very strong impact” on their daily lives.Hard data on treatment options was essential if organisations like CEAPIR wanted to better promote the interests of kidney patients said Engberg. “We need to understand if we want to better represent patients.”The debate heard of the moving experience of Peter Fahy, a 20-year-old Dublin-based kidney patient who spoke of the way the disease had transformed his life.Fahy opted for home-based PD dialysis (normally done as he sleeps) as he felt it would be less disruptive and allow him to lead a reasonably normal life as a teenager at home rather than involve several trips a week to a hospital.he said, “I have been receiving treatment since the age of 15 but just hope I can lead as normal a life as possible.”"It’s important that people are informed of all the options so they can choose a treatment that suits their lifestyle.”Findings and challengesKajsa Wilhelmsson, a senior councillor with PA firm Edelman, presented details of the survey, which was supported by Baxter Healthcare, saying that it illustrated the need for “improvement” in most countries.the report found that access to renal care for kidney disease patients was “unequal” and “erratic” with one in five patients polled saying they had not received information they found useful on dialysis treatment options.one in three patients surveyed said they were not able to choose their treatment method or were unsure about how much their choice counted, while less than half said they believed that they were only told about alternative treatment options while already on dialysis.the key challenges identified by the poll were, said Wilhelmsson, “early detection, equal quality, access, information and the education of patients”.An EU wide treatment registerFurther comment came from mark Murphy, also a vice president of CEAPIR, who called for more effective monitoring of the treatment available to patients, including a possible mandatory, EU-wide register.he said, “There are significant differences in the cost of treatment for kidney patients between member states and this is something we want to see an end of.”Murphy added that the cheapest treatment was transplantation, which he said cost around the same as a year’s worth of dialysis. however, there are also sizeable differences in the cost of dialysis treatment.Around 90 per cent of dialysis patients use HD, which is mainly performed in hospitals. Murphy said that studies have proven that between 35-55 per cent would prefer to be treated at home if given the choice.”EU member states are spending around two per cent of their total healthcare budget on dialysis treatment, yet dialysis patients make up only around 0.2 per cent of the population. National governments may not be spending their budgets wisely.”"Home treatment is cheaper and PD is significantly cheaper because it’s done at home by patients”Murphy highlighted a number of what he called “barriers to optimal care and patient choice”, including affordability, accountability, health care professional and education, commercial bias geographical complexities, organ donation culture and the structural management of health services.On accountability, Murphy called for an EU directive on mandatory reporting to a European Renal registry which would help set Europe-wide standards of quality for renal replacement therapy (RRT).he argued that a mandatory register already exists for organ transfers across the EU, but, “we need to know the EU 27 numbers on RRT. a register has to become mandatory, there is a real need for good data.”Education and supportMurphy also called on the EU to take the lead in educating healthcare professionals in identifying symptoms and supporting those countries reporting low prevalence of kidney disease.he also warned against what he called commercial bias within the prescribing of treatments linked to services supplying those treatments for patients, saying, “we need to recognise and investigate commercial interests [in treatment choices for kidney patients]. We don’t let doctors prescribe and sell medicines, but do let doctors prescribe dialysis treatment and profit from that treatment.”Irish MEP Marian Harkin also warned of the dangers of commercial bias, saying that there was a need to ensure that there was no conflict of interest surrounding the running of treatment clinics.she said there was “great interest” in the issue of patient choice and access to treatment and in “what role [EU policymakers] can play” in improving patient advocacy.she added that “there is a need for good, robust information and perhaps we can add value by looking into issues such as whether there is a possibility to access funds for more research at European level through the EU’s seventh research framework programme”.Closing the debate, Murphy said, “We have come a long way on [patient choices and access to treatment], but there is still a long way to go. “Today’s discussions in the European parliament mark a big step towards equipping patients with information and securing patient choice and equal access to renal care, both at European and national levels.”Further reading here