Both authors contributed equally to this work.
Move for Change Part I: a European survey evaluating the impact of the EPDA Charter for People with Parkinson’s disease
Version of Record online: 4 OCT 2011
© 2011 The Author(s). European Journal of Neurology © 2011 EFNS
European Journal of Neurology
Volume 19, Issue 3, pages 402–410, March 2012
How to Cite
Bloem, B.R. and Stocchi, F. (2012), Move for Change Part I: a European survey evaluating the impact of the EPDA Charter for People with Parkinson’s disease. European Journal of Neurology, 19: 402–410. doi: 10.1111/j.1468-1331.2011.03532.x
Re-use of this article is permitted in accordance with the Terms and Conditions set out at http://wileyonlinelibrary.com/onlineopen#OnlineOpen_Terms.
- Issue online: 14 FEB 2012
- Version of Record online: 4 OCT 2011
- Received 16 May 2011 Accepted 8 August 2011
- European survey;
- Parkinson’s disease;
- quality of care;
Background and purpose: The 1997 European Parkinson’s Disease Association’s (EPDA) Charter for People with Parkinson’s disease (PD) outlines their rights in terms of standards of care. It states that all patients have the right to: be referred to a doctor with a special interest in PD; receive an accurate diagnosis; have access to support services; receive continuous care; and take part in managing their illness. Move for Change is a three-part series of pan-European patient surveys based on this Charter.
Methods: This first survey, consisting of 23 questions, focusing on the initial two points of the Charter, was administered online through the EPDA and affiliated patient associations’ Web sites. Of 2149 forms received from 35 European countries, 2068 (96.2%) were analyzed, with the remainder excluded, mainly due to incomplete responses.
Results: The majority of patients were diagnosed within 2 years from the onset of first symptoms (82.7%; range, <1 year to ≥5 years). In relation to diagnosis delivery, 45.3% of patients stated that it was ‘poor’ or ‘very poor’. During the 2 years following diagnosis, 43.8% of respondents had never seen a PD specialist. Care was usually overseen by generically active neurologists (92.5%) or family doctors (81.0%), with considerable overlap between the two.
Conclusions: These data highlight challenges that patients with PD face during the period of diagnosis, despite introduction of the Charter. These findings can assist healthcare professionals and policy makers in improving the level of care for patients and their families across Europe, and we offer suggestions about how this can be achieved.