Following on from the 1997 Participation in Life survey, the EPDA carried out the Global Parkinson’s Disease survey the following year. It was one of the largest surveys ever conducted on Parkinson’s and it provided a more in-depth and rigorous investigation into the factors affecting a person with Parkinson’s (PwP) health-related quality of life (HRQL).
It was a large, international and randomised survey that included perspectives from clinicians, PwPs and caregivers 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 PwPs 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 PwPs’ HRQL, and to identify those elements of disease management that have the greatest effect on the HRQL (in addition to disease stage, related disability and anti-Parkinson’s medication).
Some of the survey’s key conclusions included:
- “Motor disability (as measured by disease stage) impacts on HRQL. Therefore, it can be reasonably assumed that interventional therapies that alleviate motor symptoms may improve HRQL. However, patients at similar stages of Parkinson’s can have varying levels of perceived HRQL. Therefore, patient-perceived HRQL may not be equated simply with disease severity or medication but may include other factors such as neuropsychiatiric complaints and non-drug therapies.”
- “They [clinicians] also found that satisfaction with the explanation of the condition at diagnosis and current feelings of optimism all have a statistically significant impact on HRQL.”
- “The data has clearly indicated that the impact of depression on HRQL is high. This finding, together with the failure of these patients to report it, indicates that depression should be taken into account by clinicians when managing Parkinson’s.”
Like the Participation in Life survey before it, the Global Parkinson’s Disease survey generated evidence – mostly from PwPs themselves – about what constituted quality of life. The surveys revealed that the telling of the diagnosis, depression and alternative types of therapy were all important to a PwP’s HRQL – in other words that drug management was only a small part of the bigger picture. There was now proof that pain, sleep, constipation and many other ‘hidden’ symptoms – not considered to be important at the time – caused greater distress.
Now, of course, these ‘hidden’ symptoms are universally known as non-motor symptoms. But the EPDA – through its innovative data collection surveys such as the Participation in Life and Global Parkinson’s Disease surveys – played a huge part in establishing their integral role in the disease process.
In addition, this wealth of evidence subsequently led to the launch of the EPDA-led Global Declaration on Parkinson’s Diseasein 2003, which urged governments around the world to support the Charter for People with Parkinson’sand make public awareness of Parkinson’s a priority health challenge.
The survey report can be downloaded here.