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European inventory

The European Inventory

My PD Journey’s first major activity was the development of a ‘European inventory’, designed to identify gaps in Parkinson’s care and seek out national examples of good practice that could be adopted in other regions. It was completed by an independent research organisation and launched in Brussels in April 2015.

The research consists of primary (qualitative and quantitative) and secondary evidence. A series of Europe-wide ‘good practice’ recommendations have been developed following in-depth analysis of the research (see link below).

It enables Parkinson’s disease stakeholders and policy-makers to better understand the different hurdles that negatively impact treating the progression of Parkinson’s.

The EPDA presented the research to the healthcare community in the form of a poster at the 20th International Congress of Parkinson’s Disease and Movement Disorders in Berlin on 21 June.

The research will be published in a peer-reviewed publication later in 2016. To receive a copy, please email secretariat@mpdj.eu.

Primary research

The primary research included a survey and in-depth interviews across 11 European countries with people with Parkinson’s, their carers and healthcare professionals.The featured countries were Denmark, France, Germany, Hungary, Ireland, Italy, the Netherlands, Slovenia, Spain, Sweden, and the UK.

The primary research study aimed to provide a ‘snapshot’ of the therapies, treatments and management that people with Parkinson’s (PwPs) and their carers had access to within the selected countries. In addition, the study aimed to gain an in-depth understanding of PwPs’ and carers’ experiences of their national healthcare systems, and what treatments and therapies had benefited them the most. 

By gaining insights into the current situation and by understanding the unmet needs, we believe cost-effective recommendations can be made to enhance the quality of life of all affected by the disease.

Secondary research

The secondary research identified compelling examples of good practice from existing care pathways, care systems, feedback from multiple Parkinson’s stakeholders, and a literature review of unpublished ‘grey’ literature. It also included evidence-based recommendations from existing academic and scientific research papers, and relevant European and international guidelines.

The findings present a more comprehensive picture of the Parkinson’s care and management within Europe compared with previous studies. It provides a strong foundation that will influence future My PD Journey discussions and activities.

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The research

The research study was divided into two streams:

  • primary research - that included a survey and in-depth interviews, providing a ‘snapshot’ of the therapies, treatments and management that people with Parkinson's and their carers had access to within the 11 countries selected across Europe
  • secondary research - that identified compelling examples of good practice from existing care pathways, care systems, feedback from multiple Parkinson’s stakeholders, and a literature review of unpublished ‘grey’ literature including rapid searches using electronic bibliographic databases: CINAHL, EMBASE, MEDLINE, PsycINFO, PsychArticles, and COCHRANE

The European Strategic Committee and Parkinson's specialist panel have used the research findings to develop recommendations that will form the basis of national coalition activity aimed at transferring good practice.


Primary research

The primary research adopted a mixed-methods approach, including both quantitative and qualitative methods.

In addition to a questionnaire-based survey, semi-structured in-depth individual and paired interviews were carried out with people with Parkinson's, carers and healthcare professionals.

The survey included socio-demographic questions, including age, sex, ethnicity, and a self-rated health analysis. The validated survey tools – EuroQol (EQ-5D) plus Schwab and England’s Daily Living Scale – were used to determine quality of life.

A total of 1,776 respondents took part in the survey across 11 European countries.


Secondary research

The secondary research identified compelling examples of good practice from:

  • existing care pathways and care systems
  • feedback from multiple stakeholders in Parkinson’s disease
  • data collected during the EPDA’s 2014 Learning in Partnership workshops
  • a literature review of relevant existing academic and scientific research papers, European and international guidelines as well as unpublished 'grey' literature such as reports, policy documents, information resources, conference abstracts, research studies by third sector organisations and government departments, newspaper articles, online discussion forums, and blogs.

 


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Recommendations

The recommendations below follow analysis of the European inventory findings as carried out by the My PD Journey multi-stakeholder coalition. The recommendations can be applied within a national or regional setting to effect improvements in the management of Parkinson’s and, at the same time, offer potential socio-and health economic benefits to healthcare systems, Parkinson’s care pathways, people with Parkinson’s, their families and carers.

  1. People with Parkinson’s should receive a personalised approach to treatment and care – one that is tailored to individual needs and preferences.
  2. People with Parkinson’s should have access to – and be referred within six months to – appropriate healthcare professionals with a specialty in Parkinson’s. This should apply to both the diagnosis (by a neurologist or doctor with a special interest in Parkinson’s) as well as the continued management and review of the disease (by a multidisciplinary team of experts).
  3. People with Parkinson’s and their carers should have access to a Parkinson’s disease healthcare professional who is trained to monitor and manage the disease progression, be a continuing point of contact for support (including home visits) when appropriate, and provide a reliable source of information about clinical and social issues.
  4. It is essential that coordination and communication between primary and secondary healthcare professionals is significantly improved and monitoring methods be developed. This will ensure people with Parkinson’s care plans remain consistent, regular and cohesive, resulting in their individual needs and preferences being met.
  5. Improved training about Parkinson’s for professionals working in nursing homes and general hospital wards is essential.
  6. People with Parkinson’s and their carers should have the opportunity to ask for – and receive – all relevant information concerning the management and treatment of their disease, enabling them to make informed decisions. In particular, patients should be able to request:
    • an appointment with a healthcare professional within two week of their initial diagnosis (if possible)
    • information on relevant support organisations and services.

Working group

The European inventory project and its working group are a collaboration between the EPDA and the International Parkinson and Movement Disorder Society European Section (MDS-ES), represented by Dr Anette Schrag as a scientific adviser.

An independent research company (Millbank Social Marketing Ltd), led by Dr Rowena Merritt, was commissioned to conduct the primary and secondary research.

The survey questions were designed to gather information about the current state of the Parkinson's care pathways in the included countries, and was developed by the MPDJ Parkinson’s specialist panel and selected EPDA members. The survey was pre-tested with a selected group of people with Parkinson's (of differing ages and years since diagnosis) before being made live.

The research findings were analysed and reported by Dr Schrag together with Millbank, and together they proposed a set of recommendations. The reports and recommendations were discussed in detail and agreed by the European Strategic Committee.

My PD Journey Breakfast workshop

brussels 14 april 2015


The EPDA held a My PD Journey breakfast workshop in April with high-level EU officials and stakeholders from across Europe to discuss ways to drive positive progress for people with Parkinson’s disease.

The workshop featured the results of the European inventory,personal accounts of Parkinson’s from the perspectives of patients and carers, policy responses from the European Parliament and the European Commission, as well as a photo booth area where participants took their photo with the EPDA’s Pledge for Parkinson’s placard.

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