The first part of the Move for Change online survey determined whether the first two points of the 1997 Charter – that PwPs “be referred to a doctor with a special interest in Parkinson’s” and that they “receive an accurate diagnosis” – are being met across Europe. Part 1 went live in April 2010 and closed at the end of October the same year.
The results from the initial survey showed clearly how PwPs are actually being managed, and the EPDA realised such data would provide compelling evidence that would support a consensus statement, which would, in turn, define how PwPs should be managed. More details about The European Parkinson’s Disease Standards of Care Consensus Statement can be found here.
More specifically, the first survey’s results highlighted areas where progress has been made and also those areas where more work is required. Interestingly, information from patient organisations was rated much more positively than the resources that are generally available from doctors.
Some positive examples:
- The majority of PwPs across Europe received their diagnosis within one year.
- The family doctor has a very important role in the ongoing care of a PwP who visits the doctor on a regular basis.
- The report highlighted the importance of the neurologist with regards to diagnosis and post-operative care.
Some negative examples:
- PwPs expressed concern over the manner in which their diagnoses were delivered. 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.
- A significant number of PwPs talked about the poor or insensitive communications received from their doctor at the time of diagnosis.
- Hospital doctors had only a minor role to play in PwPs’ management, while geriatricians were even less involved. A lack of relevant or practical information from professionals about Parkinson’s was also a recurring theme in respondents’ comments.
- The involvement from a Parkinson’s specialist was at its highest in Eastern and Southern Europe, and noticeably lower in Northern and Western Europe.
More in-depth details were published in the October 2011 issue of the European Journal of Neurology, and can be downloaded here.