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Move for Change

Move for Change Introduction by Prof Fabrizio Stocchi

The EPDA’s Move for Change campaign is the largest online European patient survey on standards of care in Parkinson’s to date. The survey was designed to identify any areas of care falling short of the standards set by the EPDA’s Charter for People with Parkinson’s and current clinical guidelines.

The results of the survey are available in a number of formats throughout this section of the website, but a great place to start is to download the booklet in the Results section.

The booklet contains the key European results, which have been presented in easy-to-understand infographics. We believe it is essential to communicate quickly and simply the survey’s core findings – that people with Parkinson’s are not receiving the standards of care that disease specialists recognise as being best practice.

Within the booklet, two eminent Parkinson’s specialists argue that the Move for Change data can assist healthcare professionals and policymakers in improving the level of care for people with Parkinson’s and their families across Europe. We agree with them. If you do too, then we would love to hear from you, and urge you to spread the word about the need for change.

You can hear one of the Parkinson's specialists – Professor Fabrizio Stocchi – talk about the Move for Change campaign in the video on top of the page.

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The Move for Change campaign at a glance

Background and purpose

The EPDA launched its Charter for People with Parkinson’s disease in 1997. This document – backed by the World Health Organisation – outlined five basic principles that have been widely agreed to be fundamental rights for people with Parkinson’s. It states that all patients have the right to:

  • be referred to a doctor with a special interest in Parkinson’s
  • receive an accurate diagnosis
  • have access to support services
  • receive continuous care
  • take part in managing their illness.

The Move for Change campaign consisted of three pan-European patient surveys that evaluated whether these standards of care were being met.

Methods

The three online surveys consisted of 51 questions relating to the Charter’s principles. They were available via the EPDA’s website and its affiliated patient associations’ websites across Europe from 2010 to 2013.

Numbers

5,366 questionnaires were analysed from people with Parkinson’s and their carers in 35 countries.

Overall conclusions

The data highlights certain challenges that people with Parkinson’s still face surrounding living with their condition, despite the introduction of the EPDA Charter in 1997. These findings can assist healthcare professionals and policymakers in improving the level of care for people with Parkinson’s and their families across Europe.

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Results

Click on the image below to download the Move for Change results booklet.

Move for Change - European results

Move for Change (part 1: Diagnosis)

The first Move for Change online survey determined whether the first two points of the 1997 Charter– that people with Parkinson's should “be referred to a doctor with a special interest in Parkinson’s” and that they should “receive an accurate diagnosis” – are actually being met across Europe. This survey went live in April 2010 and closed at the end of October that year.

Consistent findings across the 35 countries surveyed revealed that: 

  • only a minority of patients (12%) were actually referred to a Parkinson’s expert for their diagnosis
Move for Change - Key Finding 1
  • the diagnosis of the disease can take more than two years – despite clinical guidelines recommending that patients should be referred to a specialist for an accurate diagnosis within six weeks

Move for Change - Key Finding 2

  • the information people receive at the time of diagnosis is not well matched to their needs

    Move for Change - Key Finding 7

  • nearly half of the people with Parkinson’s were dissatisfied with the way their diagnosis was conveyed. Many felt that they were treated abruptly or impersonally. The poorest scores were given when the diagnosis was handled by a neurologist or hospital doctor, and the best scores were given when dealing with a family doctor.

Move for Change - Key Finding 3


If you are interested in going into much more detail about these survey results, please email  info@epda.eu.com and/or click on the links above on the right.

Of particular interest is the peer-reviewed article published in the European Journal of Neurology (see third link above right). The article was written by two high-profile Parkinson's specialists, Professor Bastiaan Bloem and Professor Fabrizio Stocchi. 

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Move for Change (part 2: Access to support services)

The second part of the Move for Change survey determined whether the third point of the 1997 Charter– that people with Parkinson's should “have access to support services” – is being met across Europe. This survey went live in April 2011 and closed at the end of October that year.

Consistent findings across the 35 countries surveyed revealed that: 

  • the neurologist and family doctor are the most accessible healthcare professionals, but an increased understanding of Parkinson’s and its symptoms is necessary to treat a patient appropriately
Move for Change - Key Finding 5
  • the use of a multidisciplinary team and additional support services in the treatment and care of Parkinson’s has been shown to be beneficial and encouraged across Europe, but access to a number of allied health services – such as Parkinson’s disease nurse specialists – is limited
Move for Change - Key Finding 9
If you are interested in going into much more detail about these survey results, please email  info@epda.eu.com and/or click on the links above on the right.

Of particular interest is the peer-reviewed article published in the European Journal of Neurology (above right). The article was written by two high-profile Parkinson's specialists, Professor Bastiaan Bloem and Professor Fabrizio Stocchi.

Move for Change (Part 3: Continuous care and taking part in managing your disease)

The third part of the survey determined whether the fourth and fifth points of the 1997 Charter– that people with Parkinson's should “receive continuous care” and should “take part in managing their illness” – are being met across Europe. This survey went live on 11 April 2012 and closed at the end of December 2012.

Consistent findings across the 35 countries surveyed revealed that:

  • consultations, although held on a regular basis, were largely routine and not arranged by the patient based on their needs
Move for Change - Key Finding 8
  • patient satisfaction levels increased with longer consultation meetings

Move for Change - Key Finding 6

  • although most patients felt they had been involved in decisions regarding their disease management, true shared decision making is still rare
Move for Change - Key Finding 4
If you are interested in going into much more detail about these survey results, please email  info@epda.eu.com and/or click on the links above on the right. 

Of particular interest is the peer-reviewed article published in the European Journal of Neurology (see second link above right). The article was written by two high-profile Parkinson's specialists, Professor Bastiaan Bloem and Professor Fabrizio Stocchi.
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