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EPDA Consensus Statement

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EPDA Consensus Statement THE EUROPEAN Parkinson’s DISEASE STANDARDS OF CARE CONSENSUS STATEMENT Consensus Statement print ready Oct 2014.indd 1 24/10/2014 16:22 Consensus Statement print ready Oct 2014.indd 2 24/10/2014 16:22 ABOUT THE EPDA ABOUT THE EPDA HE EPDA IS THE ONLY THE EPda VISION European Parkinson’s To enable all people with disease umbrella Parkinson’s in Europe to live a organisation. It President full life while supporting the Trepresents 45 member Knut-Johan search for a cure. Onarheim organisations and advocates for Norway the rights and needs of more than THE EPDA MISSION 1.2 million people with Parkinson’s In order to achieve its vision, the and their families. EPDA aims to become the leading voice for Parkinson’s in Europe – WHat DOES THE EPDA DO? Vice-president providing innovative leadership, Susanna By working with its 45 member Lindvall information and resources to organisations – who represent the Sweden national Parkinson’s associations, needs of individual people with European policymakers, the Parkinson’s and their families at a treatment industry, healthcare national level – the EPDA aims to: professionals and the media. ❙ ensure equal and timely access to In achieving these aims, the Treasurer prompt diagnosis and good- Mariella EPDA hopes to raise the profile quality Parkinson’s care across Graziano of Parkinson’s and enable people Luxembourg Europe by raising standards and living with the disease to be reducing existing inequalities treated effectively and equally ❙ increase public awareness of throughout Europe. Parkinson’s as a priority health challenge Member www.epda.eu.com ❙ help reduce stigma and remove Ami Ariel Israel discrimination against people with Parkinson’s ❙ support the development of national Parkinson’s organisations throughout Member Europe. Ann Keilthy Ireland 3 | Parkinson’s disease Consensus STATEMENT Consensus Statement print ready Oct 2014.indd 18 24/10/2014 16:22 become the leading voice for Parkinson’s EXECUTIVE in Europe – providing innovative leadership, information and resources to SUMMARY national Parkinson’s associations, European policymakers, the treatment industry, healthcare professionals and HE FActs ARE STARTLING. the media. In achieving these aims, the More than one million people EPDA hopes to raise the profile of live with Parkinson’s disease Parkinson’s and enable people living with (Parkinson’s) in Europe today the disease to be treated effectively and Tand this number is forecast to double by equally throughout Europe. 2030 (Dorsey 2007). It is the second most common neurodegenerative disease CHALLENGES (after Alzheimer’s disease) and its Unfortunately, there are major obstacles prevalence will continue to grow as to achieving these aims. Both the direct the population ages. And the economic costs of the disease (such as consultations impact of the disease is enormous – and medication) and the indirect costs the annual European cost is estimated (such as reduced working hours and at €13.9 billion (Gustavsson et al 2011). institutionalisation) are a great cause for Yet Parkinson’s is just one of many concern – as are the diverse and neurodegenerative disorders, which numerous motor and non-motor aspects will surpass cancer as the most of Parkinson’s – while hospitalisation and common group of medical conditions healthcare utilisation rates are by 2040 (WHO 2004). dangerously high. Medication is another major challenge. THE EPDA It is currently considered to be the As a result of these facts, the European cornerstone of Parkinson’s disease Parkinson’s Disease Association (EPDA) – management but the right treatment for the only European Parkinson’s umbrella the right person is not consistently organisation (representing 45 member available across Europe. In addition, organisations as of 2011) – exists to raise medication on its own is not sufficient to the profile of the disease in order to effect enhance and improve a person with change at a European political level. Parkinson’s quality of life. They also need The EPDA’s ultimate vision is to enable access to other therapies – such as physio, the 1.2 million people with Parkinsons in speech and language, and occupational. It Europe (Andlin-Sobocki 2005) to live a full is the combination of all these elements life while supporting the search for a that ensures holistic treatment, and they cure. In order to do this, it aims to need to be made available to everyone. 4 | Parkinson’s disease Consensus STATEMENT Consensus Statement print ready Oct 2014.indd 4 24/10/2014 16:22 EXECUTIVE SUMMARY There has never been “ an agreed ‘consensus’ on the definition of and members of the various what should multidisciplinary teams as well as constitute good- people with Parkinson’s and their carers. Together, in a unified voice for the first quality Parkinson’s time, they define a model for European care. Until now policymakers to follow that will ensure the optimum management of Parkinson’s. In short, policymakers need to: ❙ support initiatives ensuring equal access OPPORTUNITIES for people with Parkinson’s to good- ”Opportunities do exist, however, to quality, specialised care across Europe improve the care for people with ❙ reduce inequalities in the treatment and Parkinson’s in both the treatment and management of Parkinson’s management of the disease. Early and ❙ improve funding for Parkinson’s appropriate pharmacological research and define research priorities intervention has been shown to not only ❙ invest in optimum treatment and reduce the economic impact to both the maintenance strategies individual and to society but also enable ❙ increase public and professional people living with the disease to remain awareness of Parkinson’s in the workplace for longer, thereby ❙ minimise stigma and discrimination enabling them to contribute to society. ❙ strengthen the level of neurological care within European healthcare systems CONSENSUS ❙ provide adequate funding that supports Despite the fact that Parkinson’s affects so the continued work of national many people and represents such a Parkinson’s organisations. significant economic threat to European society, there is not – and has never been A UNITED FRONT – a ‘consensus’ on Parkinson’s management or an agreed definition of The European Parkinson’s Disease Standards of what should constitute good-quality Care Consensus Statement is unique. It is the Parkinson’s care. Until now. first document of its kind to support and The European Parkinson’s Disease encourage the drive for equality and optimisation Standards of Care Consensus Statement of Parkinson’s treatment at both a European and combines the evidence of the economic a national level. It has been developed, reviewed and emotional cost of Parkinson’s across and endorsed by European Parkinson’s Europe with the specialised knowledge specialists, people with Parkinson’s, carers and of a host of Parkinson’s experts. These 45 national Parkinson’s organisations. For a full experts include neurologists, geriatricians list of contributors, see page 26. Parkinson’s disease Consensus STATEMENT | 5 Consensus Statement print ready Oct 2014.indd 5 24/10/2014 16:22 THE COST OF Parkinson’s disease in eurOPE THE COST OF Parkinson’s DISEASE IN EUROPE The UK In 2003, the annual cost of care per person for all people with Parkinson’s by age was £5,993 ( 9,975). A move from the home to residential care was associated with an estimated 500% cost increase. 500% France =€4,421 In 1999, the average yearly cost of treating Parkinson’s was estimated at 4,421 per person, resulting in an approximate 354m expenditure of 354 million =€ across the estimated 80,000 people with Parkinson’s living in France. Spain Direct costs were significantly higher in 2009 among younger people with Parkinson’s and those with a greater severity of disease. 6 | Parkinson’s disease Consensus STATEMENT Consensus Statement print ready Oct 2014.indd 6 24/10/2014 16:22 SECTION HEAD Sweden Total direct costs of Parkinson’s were 8,328 per person in 2011, of which only 21% were drug costs. 1,200,000+ DRUG COSTS The amount of people living with Parkinson’s in €1,749 Europe, according to the latest estimates (from 2005). This number is forecast to double by 2030. The Czech INDIRECT Republic COSTS Total semi-annual costs 40% 60% of Parkinson’s were 5,510 per person in 2010. Direct costs DIRECT accounted for 60%, COSTS while indirect costs accounted for 40%. €5,510 Germany A 2010 German study revealed that the costs per person range from 18,660 for Hoehn and Yahr stages I–2, and 31,660 for Hoehn and Yahr stages 2–5. The severity of Parkinson’s differs from person to person and every case is different. €18,660 €31,660 13.9 billion €The estimated annual European cost of Parkinson’s. stages I–2 stages 2–5 The economic impact of the disease is enormous. Parkinson’s disease Consensus STATEMENT | 7 Consensus Statement print ready Oct 2014.indd 7 24/10/2014 16:22 Although a complex disorder (Keus BACKGROUND 2009), it is widely accepted that motor and some non-motor symptoms result TO Parkinson’s from the greatly reduced activity of these dopamine-secreting cells due to DISEASE premature cell death. In addition to dopaminergic cell loss, further lesions in non-dopaminergic systems are also ARKINSOn’S IS A PROGRESSIVE, common in Parkinson’s, helping to chronic and complex cause the non-motor features of the neurodegenerative disease that disease (Lees et al 2009). has no cure. It affects all aspects Pof daily living and is the most common EPIDEMIOLOGY neurodegenerative disease after There are more than 1.2 million people Alzheimer’s disease. The incidence of living with Parkinson’s (Andlin-Sobocki Parkinson’s is forecast to double by 2005) in Europe. The average age of 2030 (Dorsey 2007) primarily as a result onset is 60 years, although more than of the ageing population.
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