A new initiative in patient communication
There is plenty of information available for people with PD but this often leads to information overload, which can put off or alarm those who are less scientifically minded. Research has shown that at diagnosis, people with PD want precise information on the nature of the disease but after diagnosis, they seek information on the various ways of coping with PD and improving their quality of life.1
Parkinsonpoly makes innovative use of the concept of 'visual mnemonics', a proven psychological technique, to help recall information by associating it with visual imagery like cars and a board game. The association of PD with a board game with different squares helps to cut through the mass of conflicting and often confusing information sources on the disease and provides people with PD and their families with essential, up to date information about the disease and advice on keeping in regular contact with their doctor.
"The most effective treatment of PD symptoms is levodopa. It can provide benefit throughout the entire course of the disease and has consistently demonstrated to have a positive effect on quality of life and significantly prolongs life expectancy," said Mark Stacy MD, Director of Movement Disorders, Duke University School of Medicine, North Carolina. "However, people with PD often experience a decline or wearing-off of its clinical effects, that may produce changes in mobility, mood and sensation. They need to have regular physician assessments and be educated to medication changes associated with anti-Parkinson therapy. For this reason it is essential to alert patients to the need to review their medicines, and ensure that these re-emergent symptoms are optimised to maintain their quality of life. Parkinsonpoly is a resource that can deliver this essential information."
Parkinsonpoly therefore includes a section on how people with PD can identify breakthrough symptoms, and how to seek regular review of their disease and its treatment. As part of the initiative, a self-diagnosis tool will shortly be introduced to help them to identify the changes in their symptoms that may indicate wearing-off.
Parkinsonpoly also covers the latest news about managing and treating PD that is emerging from medical congresses and publications, such as the recent announcement of the US approval of the first new levodopa treatment in many years.
"As the first major element of the Parkinsonpoly initiative, the EPDA has worked in close partnership with people with PD, caregivers, healthcare professionals and industry to develop this information," said Mary Baker, President of the EPDA.
More detailed information is available in a new series of six information booklets for people with PD and their caregivers, available on the Parkinsonpoly website (www.parkinsonpoly.com) and also from the EPDA main
"Having this illness does not necessarily mean that you can't have a reasonably normal and exciting life and I welcome this initiative that puts problems into an overall perspective that has impact and is easy to remember" said David Jones, who has PD.
Notes to editor
1. PD is a chronic, progressive disorder of the central nervous system, which causes increasing physical disability over time.
2. The overall prevalence of Parkinson's disease in the world is estimated to be 6.3 million. It affects 1 per 100 persons over the age of 60 years and 1 per 50 people over the age of 80 years.3
3. The average person is 60 years old at the onset of the disease, although 15 percent of cases affect those under age 40.
4. While difficult to diagnose, there are four cardinal symptoms of PD. The most common and perhaps the best known is resting tremor, which is uncontrolled shaking, usually in the hands or feet and when the muscles are relaxed. Additionally, many peoples experience rigidity, or stiffness of the limbs; bradykinesia, noted by a slowness of movement; and postural instability or a difficulty with balance.
5. In addition to these visible signs, some PD peoples also experience psychological effects including memory loss and depression. While there is no cure at this time, major advances in Parkinson's treatment have occurred in recent years, based on new understandings of the condition and disease process. Early diagnosis, medications, rehabilitation strategies and self-help efforts have been shown to benefit people with PD and improve their quality of life.
The European Parkinson's Disease Association (EPDA)
1. The objective of the EPDA is to promote international understanding of Parkinson's disease, enabling people living with Parkinson's disease and their families to draw on best caring practice worldwide, to access the latest medical and surgical advice and thus make informed choices to achieve the best quality of life possible.
2. The EPDA was formed in 1992 with a membership of nine European Parkinson's patient organisations. Eleven years later, its membership has increased to 35 organisations throughout Europe. It also has six associate members including the Movement Disorder Society, the European Federation of Neurological Associations and the Tremor Foundation.
3. Parkinsonpoly has been developed with an unrestricted grant from Novartis Pharma AG and Orion Corporation ORION PHARMA.
1. Macht, Michael, Gerlich, Christianz, Ellgring, Heiner & the Infopark Collaboration (2003, January). Information Needs in Older Persons with Parkinson's Disease in Germany: A Qualitative Study [51 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research [On-line Journal], 4(1). Available at: http://www.qualitative-research.net/fqs-texte/1-03/1-03machtetal-e.htm
2. Participation in Life Survey, European Parkinson's Disease Association (more detail of citation pending)
3. Parkinson's disease fact sheet, EPDA
For further information please contact:
Catherine Barnett, Andrew Pearce or Louise Coward, Ogilvy PR Worldwide Tel: +44 (0)20 7309 1063/1279/1085
WHAT IS PARKINSONPOLY?
Parkinsonpoly uses the analogy of a board game with Parkinson's disease. It consists of various patient education tools including a website, a series of patient booklets and other patient material. The association of the disease with a board game makes the aspects of the disease more memorable to the patient and improves understanding and recall.
WHY PARKINSONPOLY IS INNOVATIVE
Parkinsonpoly makes innovative use of the concept of 'visual mnemonics', a proven psychological technique, to help patients recall information by associating it with visual imagery. Mnemonics are techniques or devices, such as a rhyme or an image, that serve to enhance the storage and the recall of information contained in the memory. Mnemonics help learning because they aid the absorption of new material and because they provide retrieval clues. For example, using the image of a pipe blocked with lime scale to explain atherosclerosis (narrowed arteries) helps patients visualise their health condition.
WHY DO WE NEED IT?
PD sufferers constantly seek information
Research has shown that people with Parkinson's disease (PD) are constantly looking for information on their disease.1 PD is a chronic, progressive disease with debilitating symptoms. During the course of their illness from first symptoms to established disease, people with PD repeatedly experience uncertainty and pose questions.
A study2 involving 6,815 people with PD from 14 different countries, to identify what PD patients need to 'participate in life' found that patients sought information on:
In a study1 carried out in January 2003 people with PD repeatedly expressed the need to know more about how to actively improve their quality of life.
The need to streamline information
The amount of information available to PD patients and their families can be overwhelming. In addition, much of the information available on the Internet can be inaccurate, misleading or extreme. Patients can feel overburdened and confused with this overload of information and misinformation.
Many patients are not scientifically minded and will be switched off by detailed medical information on their disease, so that important information may not always be communicated. The more the patient understands the more they will be able to play an active role in managing their disease.
Parkinsonpoly gives both patients and their families a visual guide to concise, structured advice and help on PD.
A recent report commissioned by the UK government highlighted that in the future patients will have an increased role in prevention, management and treatment of illness as they gain access to better information and become more fully involved in decisions about their own health.4
1. Macht, Michael, Gerlich, Christianz Ellgring, Heiner & the Infopark Collaboration (2003, Januar). Information Needs in Older Persons with Parkinson's Disease in Germany: A Qualitative Study. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research [On-line Journal], 4(1). Available at: http://www.qualitative-research.net/fqs-texte/1-03/1-03machtetal-e.
2. Participation in Life Study, 1998, EPDA (full reference pending) 3. Data on file, EPDA.
4. Securing Our Future Health: Taking a Long-Term View: Final Report. Wanless D. April 2002, HM Treasury