Survey on awareness about late-stage Parkinson’s
In March 2021, the EPDA launched an online survey focused on late-stage or 'advanced' Parkinson's1 and awareness about treatment options.
By collecting this data, we aim to understand people with Parkinson’s perception and knowledge about treatment options, especially focusing on ‘advanced’ Parkinson’s. In particular, we aim to understand if people with Parkinson’s receive timely and adequate information about late-stage Parkinson's therapies from their healthcare professionals. The responses we get from this survey will help us in our efforts of supporting the Parkinson's community get the right information at the right time.
The survey is currently available in English, and it will be published in several additional languages over the next weeks.
The questionnaire should take no more than 15 minutes to complete.
Thank you very much for helping us collect data about this important topic. If you have any questions about this survey, please contact firstname.lastname@example.org.
- Advanced' Parkinson’s generally refers to a time when symptoms have become more complex and have a stronger effect on day-to-day life – and when non-oral therapies begin to be considered as a viable option to manage symptoms. In the Hoehn & Yahr rating scale, advanced Parkinson’s is represented by stages 4 and 5. (See: Stages of Parkinson's.)
This data collection project is supported by and developed in partnership with Britannia Pharmaceuticals Ltd.
Survey on drooling (sialorrhea) in Parkinson's
In October 2020, the EPDA launched a survey focused on drooling (sialorrhea) – a very important yet often-overlooked Parkinson’s symptom.
This survey is aimed at people with Parkinson’s who experience drooling due to their condition, as well as at their family members and carers who may have important insights about the symptom to share.
By collecting this data, we aim to understand the prevalence of drooling in people living with Parkinson’s as well as the difficulties this symptom causes – from a physical, well-being and daily living perspective. In addition, we hope to gather information about if, when and how this symptom is addressed by healthcare teams. The survey findings will help us create awareness among healthcare professionals about the prevalence of drooling as a symptom of Parkinson’s and the different treatment options available.
The survey questionnaire was open until 30 November 2020.
Thank you very much to all who completed this survey! Results will be disseminated in the first half of 2021.
If you have any questions please contact email@example.com.
This data collection project is supported by our partner Merz.
European survey on the challenges of Parkinson’s carers
In January 2019, the EPDA began a new data collection project; our goal is to understand the challenges carers of people with Parkinson's have to face. We aim to demonstrate the individual and societal cost consequences that caring has on individuals – consequences that are too often ignored by governments and decision makers across Europe.
In March and April 2019, we conducted around 20 interviews with carers of people with Parkinson’s in eight European countries. These interviews gave us authentic and meaningful information about the challenges carers face, and about the impact such challenges had on their quality of life.
The data gathered during these interviews was analysed during a workshop in Paris on 29 April, where people with Parkinson’s, carers and a number of EPDA member organisation representatives participated. This information helped us develop the final online survey.
The survey is now closed. It was open from June to early September 2019 in 14 languages – thank you very much to everyone who took the time to fill in the questionnaire!
This data collection project is supported by our partner Air Liquide Healthcare.
Survey on working life and Parkinson’s by Oxford Brookes University and EuPaTh
The EPDA has been supporting a new survey project about people with Parkinson’s experience of working life and employment around the time of their diagnosis. The survey is part of a research programme exploring the economic impact of Parkinson’s on national healthcare systems and on society as a whole, with the aim of advocating for earlier, and better, services to support people soon after their Parkinson’s diagnosis.
The research project is being carried on by researchers at Oxford Brookes University (UK), in collaboration with the European Parkinson’s Therapy Centre (EuPaTh, Italy), who developed the background research work as well as the survey questionnaire.
The survey, open to everyone who has been diagnosed with Parkinson’s, was open from April to October 2019. The survey results have been developed into a MSc thesis – an abstract of which is available for download below. The full thesis, as well as a publication in an academic journal, will be available later in 2020.
Factors Affecting Change Of Paid Employment Status Of Working And Non Working People With Parkinson's in Europe – ABSTRACT
Thank you to everyone who took part to this important research project. Please note that the EPDA has been supporting this project as a dissemination partner only; the EPDA has not been involved in developing the survey. If you have any questions, please contact Prof Helen Dawes and Dr Johnny Collett at firstname.lastname@example.org.
An EPDA-UCB survey to help campaign for improvements in healthcare management
In July 2018, the EPDA, in partnership with long-term industry partner UCB, created a short online survey to better understand some of the issues people with Parkinson’s and their families/carers across Europe face on a daily basis.
Two thousand people from more than 20 countries took part in the survey, which was live until 19 October 2018.
We hoped to gain unique insights from the Parkinson's community, that would help us understand:
- How to meet a person with Parkinson’s individual needs in a tailored and holistic way, enabling them to live a full life
- How to help people with Parkinson’s find appropriate support, and to feel reassured, confident and better able to cope with everyday challenges
- How to enable people living with Parkinson’s and their families/carers to maintain their respective identities and to live a full life.
A report displaying the results of the European survey is available for download below. The analysis of the answers will be used to design and propose solutions that will help us to campaign for improvements in healthcare management and enhance people’s everyday quality of life.
An EPDA-UCB survey to better understand the challenges of living with Parkinson’s
The EPDA would like to thank UCB for its extensive support throughout the entire data collection project, and everyone who took part by answering the survey.
If you have any questions about the survey, please email us.
The European Inventory, the first phase of our multi-stakholder initiative My PD Journey, was carried out between the end of 2014 and beginning of 2015.
This research project was 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 across 11 countries.
Move for Change
The EPDA’s Move for Change data collection project was carried out between 2010 and 2013, and is the largest online European patient survey on standards of care in Parkinson’s to date.
The three-part survey – featuring responses from people with Parkinson’s and carers from 35 European countries – was designed to identify areas of care falling short of the standards set by 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.
The booklet contains the key European results, which have been presented in easy-to-understand infographics.
The Move for Change research was authored by two eminent Parkinson’s specialists – Professor Bastiaan Bloem (the Netherlands) and Professor Fabrizio Stocchi (Italy). You can hear Prof Stocchi talk about the Move for Change project below.
The data highlights certain challenges that people with Parkinson’s still face surrounding living with their condition. These findings can assist healthcare professionals and decision makers in improving the level of care for people with Parkinson’s and their families across Europe.
Part 1: Diagnosis
The first Move for Change online survey (2010) determined whether people with Parkinson's across Europe were being “referred to a doctor with a special interest in Parkinson’s” and “received an accurate diagnosis”.
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
- 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
- the information people receive at the time of diagnosis is not well matched to their needs
- 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
You can read the full results from Part 1, which were published in the European Journal of Neurology.
Part 2: Access to support services
The second part of the Move for Change survey (2011) determined whether people with Parkinson's across Europe had “access to support services”.
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
- 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
You can read the full results from Part 2, which were published in the European Journal of Neurology.
Part 3: Continuous care and taking part in managing your disease
The third part of the survey (2012) determined whether people with Parkinson's across Europe were “receiving continuous care” and “taking part in managing their illness”.
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
- patient satisfaction levels increased with longer consultation meetings
- although most patients felt they had been involved in decisions regarding their disease management, true shared decision making is still rare
You can read the full results from Part 3, which were published in the European Journal of Neurology.
Occupational Therapy Survey
The EPDA carried out its Occupational Therapy Survey from 2008 to 2009. The survey evaluated the contribution occupational therapists make to the management of Parkinson’s on a daily basis.
The survey was translated into Norwegian, Swedish and Slovenian, and the results were published in the European Neurological Journal.
Real Life, Real PD Survey
The Real Life, Real PD Survey was a patient survey conducted across 31 European countries in 2007-08, supported by pharmaceutical company GlaxoSmithKline.
It focused on the realities of living with Parkinson’s both ‘day and night’, asking questions surrounding difficulties with daily activities such as eating and dressing, mood and possible impact on relationships plus sleep disturbances and emotional well-being. Almost 3,000 people from across Europe participated in the survey.
Participation in Life Survey
The Participation in Life Survey questioned nearly 7,000 people with Parkinson’s in 14 countries worldwide in 1998-99. It asked a range of far-reaching questions relating to the physical symptoms of the disease, problems associated with their treatments and emotional and psychological problems.
Global Parkinson’s Disease Survey
The Global Parkinson’s Disease Survey was, at the time, one of the largest surveys ever conducted on Parkinson’s. Carried out in 1997-98, it provided an in-depth and rigorous investigation into the factors affecting a person with Parkinson’s health-related quality of life.
It was a large, international and randomised survey that included perspectives from clinicians, patients and carers from six countries across three continents (Canada, Japan, Italy, Spain, the UK and the US) that had similarly developed health systems. The EPDA enrolled nearly 2,000 respondents: 203 clinicians, 1,020 patients and 687 carers.
The survey’s principal aims were to improve on the limitations of previous studies in order to better investigate and understand the factors that influence quality of life, and to identify those elements of disease management that have the greatest effect on the quality of life (in addition to disease stage, related disability and anti-Parkinson’s medication).
Several organisations develop important surveys and data collection projects aimed at gaining a better understanding of Parkinson's and its impact on people's life from a clinical, social and economical point of view. The EPDA is happy to help share information about the following data collection initiatives, promoted by important international Parkinson's organisations and research institutions.
If you would like more information about these surveys, please check each survey website and contact the relative organisation or institution.
Managing Day-to-Day Stress and Resilience with Parkinson’s Disease
This survey developed by The Parkinson Alliance (USA) aims to gain insights into the perspective of individuals with Parkinson's, as it relates to stress, resilience, coping strategies, and quality of life.
Parkinson's disease symptoms survey
This survey by Parkinson's Concierge and WPP Health Practice (UK), was developed to understand what symptoms are more frequent and have a higher impact on people living with Parkinson's. This research aims to assess the symptoms burden, and to highlight symptoms for which there are insufficient treatments from a patient's perspective.
- Complete the survey questionnaire (English)
Motor Symptoms and Perceived Well-being in Parkinson’s Disease
This survey developed by The Parkinson Alliance (USA) aims to understand the experience of motor symptoms through the eyes and voice of people with Parkinson's, in order to propose improved treatment approaches.