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

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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.

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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.

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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.

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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.

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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. Treatment and one in 10 people are diagnosed before management is available for a number the age of 50 (Tanner 2002). Parkinson’s of aspects of the disease but is not yet is more prevalent in men than women, accessible to all. Ongoing research has and may affect people of all ethnicities. resulted in significant improvements It is important to remember that but more is needed to delay, stop or even Parkinson’s can affect anyone. reverse the disease. Symptoms What is Parkinson’s? Parkinson’s is predominantly Parkinson’s occurs as a result of the characterised by problems with body destruction of the nerve cells that movements – known as motor symptoms. produce the neurotransmitter dopamine These symptoms include tremor, rigidity, in the pars compacta region of the bradykinesia and postural instability substantia nigra in the brain (Chaudhuri (Pankratz 2009, Reichmann 2010). 2006). Due to this lack of dopamine, However, Parkinson’s is also associated messages in the brain fail to transmit with symptoms that are not directly smoothly to the muscles, resulting in related to movement – known as non- difficulties controlling movement motor symptoms – which include loss (Jankovic 2008). A similar destruction of taste and sense of smell, sleep occurs naturally with ageing, but in disturbances, gastrointestinal Parkinson’s the process is accelerated. complications, constipation, swallowing

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Consensus Statement print ready Oct 2014.indd 8 24/10/2014 16:22 Background to Parkinson’s disease

The effects of “ Parkinson’s involve the physical, cognitive symptoms are often poorly recognised and psychological (Chaudhuri 2006), they cause a significant impact on the quality of life of domains and impact people with Parkinson’s (Gómez-Esteban across nearly every 2010; Martinez-Martin 2011; Soh 2011) and remain a major cause of cultural, social and hospitalisation (Muzerengi 2007). (See economic boundary Table 1 on page 25 for data from three studies that indicate the impact of Parkinson’s on quality of life at different stages of the disease and highlight the disorders, anxiety, pain, fatigue, correlation with disease severity.) depression,” sexual dysfunction, The severity of Parkinson’s will differ hallucinations and psychosis, impulse from person to person as every case is control disorders, cognitive impairment different. However, a person’s disease and dementia (Barone et al 2009; severity is most commonly determined Aarsland et al 2009; Menza 2010; Wood using the Hoehn and Yahr scale, where 2010). These non-motor symptoms often stage 0 shows no symptoms of the result in the need for additional care disease and stage 5 is the most severe outside that of the specialist form. While people with Parkinson’s may neurologist or geriatrician (Hayes 2010). not experience certain disease symptoms They may also be associated with at all, others’ symptoms are likely to vary dopaminergic and non-dopaminergic from one day to the next (Politis 2010). pathologies and some are specifically Nevertheless, the effects of Parkinson’s induced by dopaminergic treatment invariably involve the physical, cognitive (Chaudhuri et al 2010; Rektorova 2010). and psychological domains and impact It is important to remember that both across nearly every cultural, social and the motor and non-motor symptoms can economic boundary. bring on hospitalisation, which results in an increase in healthcare utilisation Multidisciplinary teams and a significant escalation of economic Traditionally, the management of burden (Keus 2009, Lökk 2011). Parkinson’s involved a single medical While motor symptoms have long been specialist – most commonly a thought of as the fundamental symptoms neurologist or geriatrician. In some of the disease, the non-motor symptoms European countries, the situation has are increasingly being recognised as changed over the last two decades as it common and important components. has been recognised that there is the Despite the fact that non-motor need for a broad range of expertise to

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Consensus Statement print ready Oct 2014.indd 9 24/10/2014 16:22 optimally manage the disease. However, professionals would provide the specialist for the majority of countries this is not knowledge needed to recognise Parkinson’s the case. Despite this fact, all people with symptoms as early as possible. Parkinson’s and their carers should be Unfortunately, however, the current involved in their own disease delivery of healthcare services is management and work with a variety of inadequate and many people who require professionals – known as such care are not being referred to the the ‘multidisciplinary team’ or ‘support relevant specialist (Keus 2009), although services’ (Aragon 2010). Multidisciplinary guidelines do exist that state the teams may include: importance of such referrals (Royal Dutch ❙ general practitioners Society for Physical Therapy 2004). ❙ neurologists ❙ geriatricians stigma and discrimination ❙ physiotherapists Canadian-born sociologist Erving Goffman ❙ Parkinson’s disease nurse specialists defined stigma in 1963 as “the situation ❙ speech and language therapists of the individual who is disqualified from ❙ occupational therapists full social acceptance”. Since then, several ❙ nutritionists studies have demonstrated that ❙ psychologists, ideally specialised in depression and anxiety – key Parkinson’s Parkinson’s non-motor symptoms – are associated ❙ pharmacists with stigma (Tickle-Degnen 2011). Equally, ❙ complementary therapists. the World Health Organisation states:

A multidisciplinary team approach – including safety within the home appropriate to the stage of the disease as well as combining both pharmacological Public awareness of and non-pharmacological treatments – is “ Parkinson’s as a the optimum approach for such a complex and multifaceted disease (Van priority health der Marck 2009, Aragon 2010). It has been challenge needs to shown that Parkinson’s disease nurse specialists form a key part of the increase. This would multidisciplinary workforce (MacMahon then reduce stigma 2006) and that the quality of life of people living with the disease can be improved and discrimination with their support. In the same way, enhanced training for other healthcare 10 | Parkinson’s disease Consensus Statement ”

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“Barriers to effective care include the lack The cost of Parkinson’s of resources, lack of trained providers, The economic consequences of and the social stigma associated with Parkinson’s across Europe are mental disorders including depression.” considerable. The estimated annual total For people with Parkinson’s, stigma and cost of the disease is €13.9 billion discrimination often results from a lack (Gustavsson et al 2011) and this figure will of public and professional awareness of increase as the number of people with the disease. Data from the EPDA’s 2009 Parkinson’s in Europe continues to grow. Perceptions of Parkinson’s survey (which It has frequently been shown that the interviewed more than 5,000 members of annual cost of Parkinson’s per person the general public across Europe) increases as the disease becomes more indicated that although four in severe. A German study revealed 10 people know someone that Parkinson’s costs rose with Parkinson’s, two from €18,660 (for Hoehn and thirds of the population Yahr stages I–2) to €31,660 do not know how 13.9bn (for Hoehn and Yahr €The estimated annual widespread the disease cost of Parkinson’s in stages 2–5 (Winter 2010). is or understand its Europe. This figure will UK figures, meanwhile, challenges or impact. continue to grow as the support this view. A Therefore, there is a population ages. report stated that the need to increase public See pages 6-7 for more on annual cost per person awareness of Parkinson’s as the cost of Parkinson’s with Parkinson’s at Hoehn a priority health challenge, and Yahr stages 3–5 was which would, in turn, reduce its approximately €72,277 (Findley stigma and remove discrimination against 2011). Such costs are divided into direct people with Parkinson’s in the workplace. costs (which include consultations, hospital In short, there are currently not admissions, tests and investigations) and enough employer strategies that support indirect costs (which include early people with Parkinson’s in the workplace retirement, reduced working hours for – such as encouraging the provision of carers and institutionalisation) (Hagell occupational therapy, granting flexibility 2002, Lindgren 2004, Andlin-Sobocki 2005). to attend medical appointments, and In addition, it costs approximately giving employees with Parkinson’s the €8,300 more in healthcare bills for option to work from home. Encouraging each person with Parkinson’s compared to these actions is essential to increase those who do not have the disease. disease awareness – both among This additional cost is attributed to longer employers and employees – and enable stays in hospital, more days in long-term them to feel more accepted by society. care (such as nursing homes) and increased

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numbers of prescriptions (Chen 2008). A UK study revealed that moving a person with Parkinson’s from their home into Early drug treatment residential care was associated with an approximate 500 per cent cost increase “ combined with (Findley 2003). Similar studies have also therapeutic shown significant increases in expenditure as symptoms progress (Hagell 2002, Dodel interventions can 2008, Findley 2007 and 2011. See also table reduce the economic 1 on page 21), while non-motor symptoms are a major source of hospitalisation impact of Parkinson’s and institutionalisation – both key – and in some cases cost-drivers in Parkinson’s care – and have an impact on continuing delay the progression employment (Dodel 2008). It is important to note, however, that of the disease, which these figures do not represent the full maintains a person’s picture. For example, indirect costs increase due to reduced earnings of both quality of life for a the person with Parkinson’s and their longer period of time family carer(s) combined with the hidden costs associated with the resulting loss of productivity (Chen 2008). (Table 2 on pages 22-23 provides a detailed summary of the economic cost of Parkinson’s.) ” In contrast, studies have shown that early drug treatment combined with therapeutic interventions can reduce the economic impact of Parkinson’s – and in some cases delay the progression of the disease, which maintains a person’s quality of life for a longer period of time (Olanow 2009). Other benefits that can stem from such proactive approaches include reduced hospital admissions, relapse rates and symptom severity (Bird 2010). Of course, improved quality of life is not only an economic requirement – it is also a goal in itself.

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Consensus Statement print ready Oct 2014.indd 12 24/10/2014 16:22 the consensus statement

How people with the parkinson’s should consensus be managed

statement People with Parkinson’s should be referred to a doctor with a special interest in Parkinson’s hings need to change. But A doctor with a specialist interest in we, the Parkinson’s community, Parkinson’s will give the most reliable t cannot implement these changes diagnosis due to their greater alone. We need the support of national familiarity and experience with the and European policymakers to ensure disease (Pahwa 2010) – particularly its that the already immense economic motor and non-motor symptoms. However, and societal burden does not accelerate referrals to a Parkinson’s specialist can be further as our population continues to a lengthy process and access is historically age (see tables and statistics on the very limited (Chaudhuri 2004). A reason economic impact of Parkinson’s on for this is that the number of people a pages 6-7 and 21-23). general practitioner sees with Parkinson’s would be a fraction of those seen by a Opportunities for change do exist. This specialist neurologist (Galvin 2009) unique Consensus Statement – endorsed by and, consequently, they will be less likely European Parkinson’s specialists, people to be familiar with the symptoms with Parkinson’s, carers and 45 national and necessary procedures of care Parkinson’s organisations – provides (Ghosh 2010). guidelines for policymakers on: In addition, non-motor symptoms are ❙ how people with Parkinson’s should be often inadequately treated by neurologists, managed to ensure their effective and in more than 50 per cent of participation within society consultations they remain unidentified. ❙ the areas that need to be focused on to They require different treatments and, make the above a reality. most importantly, have different prognoses (Chaudhuri 2010). Non-motor symptoms can occur at any stage, and many can precede motor symptoms by more than a decade. Specialist Parkinson’s doctors are therefore more likely to detect these symptoms and maintain a more holistic approach to the disease’s

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Consensus Statement print ready Oct 2014.indd 13 24/10/2014 16:22 treatment and management (Engstrom people as soon as the early signs and 1994, Chaudhuri 2004 and 2010). symptoms of Parkinson’s are detected so Non-motor symptoms are wide ranging that treatment options can be explored and varied. They include bladder (Bird 2010, Pahwa 2010). An unwelcome complications, visual hallucinations, consequence for European governments dementia, psychosis, falls, gastrointestinal is that inaccurate diagnoses – that result complications, swallowing disorders and in unnecessary or incorrect diagnostic cognitive impairment. The most common tests – dramatically increase their of these symptoms are sleep disturbances, already oversubscribed healthcare costs which are unrecognised in more than 40 ❙ the doctor – or ideally the specialist per cent of people with Parkinson’s. Many team – allocate enough time to of these symptoms often require treatment ensure the person with Parkinson’s from other specialist areas – for example, and their family fully comprehends bladder complications would require what they are being told and what assistance from a urologist (Fowler 2010). implications the news holds for them. Evidence from the Global Parkinson’s People with Parkinson’s should Disease Survey Steering Committee receive an accurate diagnosis (2002) also revealed that the satisfaction The telling of a diagnosis of Parkinson’s (or lack of it) with the explanation of will have a long-term impact on every the disease at the time of diagnosis has aspect of a person’s life (Schrag 2000) a significant impact on a person with and those of their family (Chrischilles Parkinson’s later life 1998). However, there is no simple or ❙ a diagnosis is accurate and fully accessible diagnostic test for Parkinson’s explained. When this is achieved, due to the disease’s complexity. A clinical most people with Parkinson’s are able diagnosis is always required, which relies to achieve a good quality of life for on an expert’s clinical assessment many years (Jankovic 2008, Pankratz 2009). To ❙ people with Parkinson’s are prescribed complicate matters further, Parkinson’s medication as early as possible. This will is a difficult disease to diagnose as it can improve their quality of life – and in present itself in many different ways, some cases might even delay the especially in the early stages when its progression of the disease (Olanow 2009) signs and symptoms are subtle (Koller ❙ the multidisciplinary team be involved 1997). In such cases, the use of established as soon as the disease has been diagnostic tools that detect the loss of diagnosed. This could delay the dopamine in the brain may be useful. development of further complications, It is therefore essential that: therefore reducing hospital admissions, ❙ specialist advice is made available to relapse rates and symptom severity,

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which would in turn reduce the support services are available to every disease’s economic impact on both the person with Parkinson’s in Europe. individual and society (Bird 2010). An optimum multidisciplinary team approach should also include the In short, earlier intervention is more cost carers’ needs. For example, occupational effective for individuals and society. therapy may help carers cope with people with Parkinson’s more complex People with Parkinson’s should situations, thereby delaying the need for receive access to support services assisted or residential care (Dyck 2009, Support services – namely access to a Van der Marck 2009) and reducing multidisciplinary team – when used in associated costs. However, a vital but conjunction with medical treatments in unacknowledged consideration is that the the early stages of the disease can help family and carers often carry the physical people with Parkinson’s live a full life, and emotional strain of day-to-day care. work for a greater length of time and stay As a result, psychosocial disturbances, at home longer despite their symptoms particularly depression and anxiety, have (Vossius 2009). It is vital that all of these been known to develop for carers (Di Luca 2011), a reality that needs to change. In addition, national Parkinson’s disease organisations play an integral role in supporting people with Parkinson’s, their Support services – families and carers, healthcare professionals “ namely access to a and healthcare systems. As many of their resources are often very limited, however, multidisciplinary much of their potential often fails to be realised. These organisations can provide an team – when used important link between all those impacted in conjunction with by Parkinson’s and the healthcare providers who are committed to improving their care. medical treatments There is scope to build the capacity of in the early stages these organisations across Europe, which would ensure their development can help people as well-informed and effective patient with Parkinson’s representatives and advocates. Even modest funding would be translated into live a full life tangible results in improving awareness and education in Parkinson’s. A strong network of national ” Parkinson’s disease Consensus Statement | 15

Consensus Statement print ready Oct 2014.indd 15 24/10/2014 16:22 By being fully involved “ in their treatment and therapy, people commonly prescribed drug classes: can regain their levodopa (l-dopa); standard-release or controlled-release dopamine agonists; confidence and monoamine oxidase-B (MAO-B) participate more inhibitors; and catechol-O- methyltransferase (COMT inhibitors). fully in society Ensuring doctors and their patients have access to the full range of medicines that are licensed and approved for the use in the treatment of Parkinson’s allows for a Parkinson’s organisations would raise greater individualisation of treatment ”awareness and provide education about ❙ have the option of receiving surgical the disease, enabling people with opinion, infusion treatments and any Parkinson’s and their carers to continue future treatment intervention that has to participate effectively within society. been proven to be efficacious and safe ❙ be considered for support from People with Parkinson’s should palliative care specialists and the receive continuous care multidiscipinary team (Bunting-Perry A wide range of treatments and support 2006). People with Parkinson’s have not services is required to ensure that the traditionally been considered for journey from diagnosis to the end stages support from palliative care specialists of the disease is as smooth as possible for despite having the same palliative care each person with Parkinson’s and their needs as many others – such as people families (Ghosh 2010). with advanced cancer. Indeed, the Where possible, every person with nature of Parkinson’s and its physical Parkinson’s in Europe should: and psychological challenges suggest ❙ remain under the same care team for that a palliative care approach may be the duration of their treatment, thereby extremely beneficial (Lanoix 2009). ensuring that a consistent and supportive relationship can develop People with Parkinson’s should take between the person, their doctor and part in managing their illness the other members of the team, as well When diagnosed with Parkinson’s, people as encouraging improved disease can struggle to come to terms with the management and better communication loss of independence and control that the (WHO 2003, Hudson 2006, Giles 2009) disease brings. By being fully involved in ❙ expect – and be entitled to receive – the the choice of treatment and therapy from optimum treatment available, which the beginning, however, they can increase should include access to the four most their compliance to therapy, regain their

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confidence and control, and participate what european more fully in society (WHO 2003). Doctors who actively engage with policymakers people with Parkinson’s – by increasing need to do their understanding of the disease process and explaining how it may affect Support initiatives that ensure equal them in the future – succeed in 1 access to good-quality, specialised improving their quality of life. Parkinson’s care across Europe. For example, a Japanese study showed there was a clear correlation between Reduce inequalities in the treatment patient quality of life and patient 2 and management of Parkinson’s. knowledge about Parkinson’s (Shimbo 2004). Similarly, a Scottish study identified Improve funding for Parkinson’s a significant positive parallel between 3 research and define research priorities. quality of life and the satisfaction of the person with Parkinson’s. The researchers Invest in optimum treatment and claimed that the more involved a 4 maintenance strategies. patient was in the administration of their own treatment, the more satisfied they Increase public and professional became (Grosset 2005). By being able to 5 awareness of Parkinson’s. make decisions regarding their own treatment, therefore, people with Minimise stigma and Parkinson’s will be in a position to regain 6 discrimination. control of their lives and feel able to remain in employment longer, thereby Strengthen the level of neurological financially contributing to society. 7 care within European healthcare Similarly, non-compliance to treatment systems. is common in Parkinson’s (Leopold 2004, Davis 2010, Grosset 2010, Tarrants 2010). Provide adequate funding that supports However, fully involving patients in their 8 the continued work of national treatment and therapy decisions helps Parkinson’s organisations. improve compliance and leads to a greater understanding of the disease (WHO 2003) and improved management (Kulkarni 2008). Evidence has also shown that efforts to promote medication adherence in Parkinson’s may lead to cost savings for managed care systems (Davis 2010).

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Consensus Statement print ready Oct 2014.indd 17 24/10/2014 16:22 REFERENCES

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Findley LJ, Wood E, Roeder C, Grosset D, European PD Koller WC, Montgomery EB. Bergman A, Schifflers M. Therapy Compliance Group. ‘Issues in the early diagnosis of ‘The economic burden of advanced ‘Therapy adherence issues in Parkinson’s disease.’ Parkinson’s disease: an analysis of a Parkinson’s disease.’ Neurology 1997; 49: S10-25 UK patient dataset.’ J Neurol Sci 2010; 289: 115-8 J Med Econ 2011; 14(1): 130-9 Kulkarni AS, Balkrishnan R, Grosset KA, Grosset DG. Anderson RT, Edin HM, Fowler CJ, Dalton C, Panicker JN. ‘Patient-perceived involvement and Kirsch J, Stacy MA. ‘Review of neurologic diseases for satisfaction in Parkinson’s disease: ‘Medication adherence and the urologist.’ effect on therapy decisions and associated outcomes in medicare Urol Clin North Am 2010; 37(4): 517-26 quality of life.’ health maintenance organization- Mov Disord 2005; 20: 616-9 enrolled older adults with Galvin JE, Meuser TM, Boise L, Parkinson’s disease.’ Connell CM. ‘Predictors of physician Gustavsson A et al. ‘Cost of Mov Disord 2008; 23(3): 359-65 referral for patient recruitment to disorders of the brain in Europe Alzheimer disease clinical trials.’ 2010.’ Eur Neuropsychopharmacol 2011 Lanoix M. ‘Palliative care and Alzheimer Dis Assoc Disord 2009; 23(4): Parkinson’s disease: managing 352-6 Hagell P, Nordling S, Reimer J, the chronic-palliative interface.’ Grabowski M, Persson U. ‘Resource Chronic Illn 2009; 5: 46-55 Gao X, Chen H, Schwarzschild MA, use and costs in a Swedish cohort of Ascherio A. ‘Use of ibuprofen and patients with Parkinson’s disease.’ Lees AJ, Hardy J, Revesz T. risk of Parkinson disease.’ Mov Disord 2002; 17(6): 1213-20 ‘Parkinson’s disease.’ Neurology 2011; 76(10): 863-9 Lancet 2009 Jun 13; 373 (9680): Hayes MW, Fung VS, 2055-66 Ghosh R, Liddle BJ. ‘Emergency Kimber TE, O’Sullivan JD. presentations of Parkinson’s disease: ‘Current concepts in the Leopold NA, Polansky M, early recognition and treatment are management of Parkinson disease.’ Hurka MR. ‘Drug adherence in crucial for optimum outcome.’ Med J Aust 2010; 192(3): 144-9 Parkinson’s disease.’ Postgrad Med J 2010; doi: 10.1136/ Mov Disord 2004; 19(5): 513-17 pgmj.2010.104976 Hudson PL, Toye C, Kristjanson LJ. ‘Would people with Parkinson’s LePen C, Wait S, Moutard-Martin F, Giles S, Miyasaki J. ‘Palliative disease benefit from palliative care?’ Dujardin M, Ziégler M. stage Parkinson’s disease: patient Palliat Med 2006; 20(2): 87-94 ‘Cost of illness and disease severity in and family experiences of a cohort of French patients with health-care services.’ Jankovic J. ‘Parkinson’s disease: Parkinson’s disease.’ Palliat Med 2009; 23(2): 120-5 clinical features and diagnosis.’ Pharmacoeconomics 1999; 16(1): 59-69 J Neurol Neurosurg Psychiatry 2008; Global Parkinson’s Disease Survey 79(4): 368-76 Lindgren P. ‘Economic evidence in Steering Committee. ‘Factors Parkinson’s disease: a review.’ impacting on quality of life in Keränen T, Kaakkola S, Eur J Health Econ 2004; 5(Suppl. 1): Parkinson’s disease: results from Sotaniemi K et al. S63-6 an international survey.’ ‘Economic burden and quality of life Mov Disord 2002; 17(1): 60-7 impairment increase with severity of Lökk J, Borg S, Svensson J, Persson PD.’ Parkinsonism Relat Disord 2003; U, Ljunggren G. ‘Drug and Gómez-Esteban JC, Tijero B, 9(3): 163-8 treatment costs in Parkinson’s Somme J, et al. ‘Impact of disease patients in Sweden.’ psychiatric symptoms and sleep Keus SHJ, Munneke M, Nijkrake Acta Neurol Scand DOI: disorders on the quality of life of MJ, Kwakkel G, Bloem BR. 10.1111/j.1600-0404.2011.01517.x. patients with Parkinson’s disease.’ ‘Physical therapy in Parkinson’s ©2011 John Wiley & Sons A/S J Neurol 2011 Mar; 258(3): 494-9 disease: evolution and future challenges.’ Mov Disord 2009; 24(1): 1-14

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Evidence

Table 1: Summarised evidence of Parkinson’s on quality of life

Reference Country Study Type Sample Instrument Results/Findings Size Used

Schrag et al. UK Population-based 124 PDQ-39 In all assessments, regardless which 2000 EQ-5D instrument used, quality of life (QoL) was SF-36 significantly decreased by increasing disease severity (summary index). • PDQ-39: HY 1: 10.5 versus HY 5: 66.7 • EQ-5D (summary index): HY 1: 0.96 versus HY 5: -0.21 • SF-36 (physical): HY 1: 48.6 versus HY 5: 20.8 • SF-36 (mental): HY 1: 48.0 versus HY 5: 37.3

Keränen et al. Finland Cost of Illness 260 PDQ-39 The correlation between utility score 2003 EQ-5D assessed on two instruments (15D and 15D EQ-5D) and severity was 0.51 and 0.45 respectively. The correlation between QoL and Parkinson’s severity was 0.5, when QoL was measured with PDQ-39. A strong correlation between QoL, cost of illness and disease severity was reported. The QoL of Parkinson’s patients with motor fluctuations was also lower than that of patients without motor fluctuations.

Pechevis et al. Europe Observational PDQL Both instruments showed significant 2005 SF-36 reductions of QoL scores with increasing severity of dyskinesias. The effect of dyskinesias appeared to be in addition to that of motor fluctuations and disease severity.

Notes PDQ-39: 39-item Parkinson’s disease questionnaire; PDQL: Parkinson’s disease quality of life measure; SF-36: Study short form 36; EQ-5D: EuroQoL 5D; HY 1: Hoehn and Yahr stage 1; HY 5: Hoehn and Yahr stage 5

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Study Key findings

3-month prospective analysis of the • 3-monthly direct cost of Parkinson’s per person was €2,664. economic impact of Parkinson’s in • Progression of symptoms (as measured via HY stage) increased expenditure Germany (HY 1=€987; HY 5=€4,980). (Dodel et al 1998) • The onset of motor complications parallels an increase in costs.

Prospective study of direct and • The annual indirect cost per person was €6,984. indirect healthcare costs in France • Average yearly cost of treating Parkinson’s in France is estimated at €4,421 (LePen et al 1999) per person, resulting in an approximate expenditure of €354 million across the estimated 80,000 people with Parkinson’s.

Direct and indirect cost analysis in • Total annual costs for Parkinson’s were €13,800 per person. Swedish people with Parkinson’s • Direct costs were €7,899 per person. (Hagell et al 2002)

Prospective study of direct • Annual cost of care per person for all people with Parkinson’s by age was healthcare costs in the UK £5,993 (€9,975). (Findley et al 2003) • Progression of symptoms (as measured via HY stage) significantly increased expenditure. • A move from the home to residential care was associated with an estimated 500% cost increase.

A Cross-sectional study of the • Total costs were €11,800 per person. The annual direct costs were €4,900 economic burden of Parkinson’s per person. in Finland • A strong correlation was made between quality of life, cost of illness and (Keränen et al 2003) severity of Parkinson’s.

Six-month observational study to • Total medical and non-medical direct costs from the perspective of statutory evaluate the health economic health insurance (GKV) amounted to €3,380 ± €4,230. burden of Parkinson’s in Germany • Total indirect costs amounted to €3,180 ± €6,480. (Spottke et al 2005) • Multivariate analyses of the direct costs revealed disease severity and health-related quality of life to be significant predictors of increased cost.

Three-year study of the economic • Total average cost per person with Parkinson’s per month amounted to aspects of Parkinson’s in Germany €1,007.55 (€603.33 as direct costs and €404.22 as indirect costs). (Dengler et al 2006) • Costs increased in proportion to HY stage, declining with stages 4 and 5.

Summary of the incidence and costs • Costs increased in proportion to HY stage: annual cost per person with of Parkinson’s in Australia in 2005 Parkinson’s in HY 1 equated to €2,481, compared with €7,585 for those (Access Economics 2007) in HY 5. • These estimates were developed by applying the weighted average of ratios developed from both Findley et al (2003) and Spottke et al (2005).

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Table 2: The economic impact of Parkinson’s (continued)

Study Key findings

Evaluation of costs and health-related • Total annual costs per person of €20,860 (including direct costs of €3,720 quality of life in patients with excluding medications, drug costs of €3,840 and indirect costs of €6,360). Parkinson’s in Europe – Health • Progressive symptoms increase treatment costs. Patients with dyskinesia; economics survey, Germany costs almost double (€10,760) compared to patients without. Also, motor (Dodel et al 2008) fluctuations increased by€ 5,000 to €11,040. • Indirect costs are significantly higher than the direct costs associated with Parkinson’s.

A cross-sectional study to evaluate • Average total 3-month direct cost amounted to €2,631 per person. the health-related economic burden • Medical treatment accounted for 34% of the total cost, with an average of Parkinson’s in Spain cost per person of €669. (Cubo et al 2009) • Direct costs were significantly higher among younger patients, those with a higher HY stage and greater severity of disease.

A cohort study investigating the costs • Total semi-annual costs of Parkinson’s were €5,510 per person. of Parkinson’s in the Czech Republic • Direct costs accounted for 60% of the total costs, indirect costs accounted (Winter et al 2010) for 40%. • People with Parkinson’s treatment expenditure accounted for 40% of their income. • Study demonstrates a considerable economic burden of Parkinson’s in the Czech Republic.

Analysis of an advanced Parkinson’s • Average 12-monthly total costs increased depending on the amount of time UK patient dataset, with regard to per day a patient spent in an ‘off’ state: <25% of their waking hours = the economic burden of the disease €29,808; >75% of their waking hours = €72,277 (HY stages 3–5). (Findley et al 2011) • Overall, 7% of costs were attributed to direct medical care, 50% were attributed to direct non-medical care and 43% to indirect informal care.

Direct cost analysis in Swedish • Total direct costs for Parkinson’s were €8,328 per person, of which drug costs people with Parkinson’s were only 21%. (Lökk et al 2011)

Note HY 1: Hoehn and Yahr stage 1; HY 3: Hoehn and Yahr stage 3; HY 5: Hoehn and Yahr stage 5. The euro values in these studies were calculated as per the conversion rates at the time

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Biomarker A substance measured in blood whose concentration reflects the severity or presence of a disease state Bradykinesia Abnormal slowness of movement; sluggishness of physical and mental responses Carers A carer is someone who takes regular, ongoing care of a family member or friend who needs help due to illness, age or disability. A carer can be anyone – of either sex, or any age – and is generally unpaid Cognitive impairment affects brain functions relating to thought processes such as thinking, reasoning and judgement, remembering, imagining, learning, intuition, sense and perception, and understanding Compliance Consistently taking the right amount of medication at the right time COMT inhibitors Catechol-O-methyltransferase inhibitors – a group of drugs used as a treatment for Parkinson’s. COMT inhibitors are given alongside levodopa to prevent it being broken down in the body and brain Dopamine A neurotransmitter that is produced in several areas of the brain, including the substantia nigra. When dopamine is given as a drug it does not directly affect the central nervous system because it cannot cross the blood-brain barrier. To increase the amount of dopamine in the brain, levodopa – the precursor of dopamine – can be used because it can cross the blood-brain barrier Dopamine agonists Dopamine receptor agonists are drugs that have a structure very similar to dopamine. Because of this similarity, they are able to mimic the action of dopamine rather than replenish the inadequate supply of dopamine in the way levodopa does. Unlike levodopa, they do not need to be converted by the brain cells first EPDA European Parkinson’s Disease Association GP General practitioner Hoehn & Yahr The Hoehn & Yahr (HY) scale is a system used to rate Parkinson’s as one of five stages. Stage 0 represents no symptoms and stage 5 means the most severe disease stage

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L-DOPA Levodopa (L-3,4-dihydroxyphenylalanine) – the precursor to the neurotransmitters dopamine, noradrenaline and adrenaline – is used in the clinical treatment of Parkinson’s and dopamine-responsive dystonia MAO-B inhibitors Monoamine oxidase B inhibitors are a class of drugs that are used to treat the symptoms of early Parkinson’s as well as to treat levodopa-induced motor fluctuations in more advanced disease. They work by stopping dopamine being broken down in the brain Neurotransmitter a chemical that is present in the nervous system to carry messages between different nerve cells. Examples of neurotransmitters include dopamine, acetylcholine, noradrenaline and serotonin (the ‘feel good’ chemical). Dopamine is not the only neurotransmitter that is involved in Parkinson’s ‘Off’-stage Parkinson’s It is one of the stages in the ‘on-off’ phenomenon experienced by some people with Parkinson’s. This phenomenon can best be described as an unpredictable shift from mobility (‘on’) to a sudden inability to move (‘off’). The ‘on-off’ attacks are unpredictable fluctuations in response to medication, which may last up to several hours Palliative care Palliative care is any medical treatment that aims to make life more comfortable for people with an advanced chronic, progressive condition. It includes the management of pain and symptoms, together with emotional, psychological and spiritual support Parkinsonism Parkinsonism is the generic name given to a group of conditions that feature the main characteristics of Parkinson’s: tremors, rigidity of muscles, mobility problems and bradykinesia (slowness of movement) Pars compacta a portion of the substantia nigra Progressive disorder a condition that becomes worse over time Substantia nigra a brain structure located in the midbrain that plays an important role in reward, addiction and movement. Parkinson’s is caused by the destruction of dopaminergic neurons in the substantia nigra

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Consensus Statement print ready Oct 2014.indd 29 24/10/2014 16:22 section head Contributors contributors

This Consensus Statement has been developed and reviewed by a number of European key opinion leaders in the field of Parkinson’s as well as Parkinson’s patient organisations. Each of the following contributors has worked with the EPDA to try to standardise the care, treatment and management of the disease and therefore improve the quality of life of people with Parkinson’s throughout Europe.

Irena Rektorova Urszula Fiszer The EPDA EPDA member EPDA Medical Neurologist Neurologist Knut-Johan organisations Advisory Board Czech Republic Poland Onarheim 45 Parkinson’s Dr Dieter Volc Olivier Rascol Cristina Sampaio President organisations Dr Chris Van der Norway from the following Neurologist Clinical Linden Susanna Lindvall countries France pharmacologist contributed to Prof Maja Relja Portugal Vice-president Jens Volkmann Sweden this document: MU Dr Petr Dušek Austria; Belgium; Neurologist Eduardo Tolosa Mariella Graziano Lene Werdelin Germany Neurologist Bulgaria; Croatia; Treasurer Cyprus; the Czech Christiane Nazon Spain Panayiotis Zikos Luxembourg Republic; Denmark; Dr András Fazekas Neurologist Per Odin Estonia; the Faeroe Ann Keilthy Prof Eldad Melamed Greece Neurologist Member Islands; Finland; Ireland France; Georgia; Dr Mindaugas Socas Alberto Albanese Sweden Germany; Greece; Dr Alexandre Neurologist Murat Emre Ami Ariel Member Hungary; Iceland; Bisdorff Italy Neurologist Ireland; Israel; Italy; Israel Dr Norbert R Vella Lucilla Bossi Turkey Lithuania; Branko Šmid Prof Dr E Ch Person with Ana Aragon Luxembourg; Malta; Quality of life the Netherlands; Wolters Parkinson’s Occupational projects Norway; Poland; Dr Arnulf Hestnes Italy therapist Slovenia Portugal; Romania; Dr Anna Krygowska Fabrizio Stocchi UK Stephen Pickard Russia; Serbia; Neurologist Lesley Findley Legal adviser Slovenia; Spain; Helena Coelho PhD Italy Neurologist Brussels Sweden; Dr Ioana Stanescu Switzerland; Turkey; Lizzie Graham Mariella Graziano UK Ukraine; and the UK. Prof Dr Zvezdan Secretary general Pirtošek Physiotherapist; Tom Isaacs UK President of the Person with Prof Dr Matthias Kate Browne Association Parkinson’s Sturzenegger External affairs Prof Dr Bulent Elibo of Physiotherapists UK UK in Parkinson’s Prof Vladyslav V Paul Kemp Disease Europe Bezrukov Nuclear medicine (APPDE) physician Luxembourg UK

Bastiaan Bloem Elina Tripoliti

Neurologist Speech and Netherlands language therapist Peter UK Hoogendoorn Carer Netherlands

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