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Move for Change Part II: a European survey evaluating the impact of the EPDA Charter for people with Parkinson's disease

  1. F. Stocchi1,*,
  2. B. R. Bloem2

Article first published online: 3 OCT 2012

DOI: 10.1111/j.1468-1331.2012.03876.x

Issue

European Journal of Neurology

European Journal of Neurology

Volume 20, Issue 3, pages 461–472, March 2013

Additional Information

How to Cite

Stocchi, F. and Bloem, B. R. (2013), Move for Change Part II: a European survey evaluating the impact of the EPDA Charter for people with Parkinson's disease. European Journal of Neurology, 20: 461–472. doi: 10.1111/j.1468-1331.2012.03876.x

Author Information

  1. 1

    Department of Neurology, Institute for Research and Medical Care, IRCCS San Raffaele, Rome, Italy

  2. 2

    Department of Neurology, Donders Institute for Brain, Cognition and Behaviour, Radboud University Nijmegen Medical Centre, Nijmegen, the Netherlands

*Correspondence: F. Stocchi, Department of Neurology, Institute for Research and Medical Care, IRCCS San Raffaele, Via della Pisana 235, 00163 Rome, Italy (tel.: +39 6 6605 8456; fax: +39 6 4991 4607; e-mail: fabrizio.stocchi@sanraffaele.it).

  1. Re-use of this article is permitted in accordance with the Terms and Conditions set out at http://wileyonlinelibrary.com/onlineopen#OnlineOpen_Terms

Publication History

  1. Issue published online: 14 FEB 2013
  2. Article first published online: 3 OCT 2012
  3. Manuscript Accepted: 21 AUG 2012
  4. Manuscript Received: 22 JUN 2012

Funded by

  • Italian Research Council
  • EPDA

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Keywords:

  • Charter;
  • European Parkinson's Disease Association;
  • European survey;
  • funding;
  • Parkinson's disease;
  • quality of care;
  • support services

Background and purpose

The Move for Change campaign is a three-part series of pan-European surveys designed by the European Parkinson's Disease Association (EPDA) to assess the impact that the EPDA Charter for People with Parkinson's disease (PD) has had since its launch in 1997. Here, we report results from the second survey, focusing on the third right of the Charter; that is, ‘all patients have the right to have access to support services’. Although the level of evidence for different support services varies, it is important to ensure that patients can access services with clinically proven benefits.

Methods

This survey comprised nine questions administered online via the EPDA and PD organization Web sites. Accessibility of support services was defined as ‘services/medication/multidisciplinary healthcare professionals, etc. being available and on hand to patients when required’.

Results

Neurologists and general practitioners (GPs) received highest accessibility results (90.0 and 87.0% of respondents, respectively), with moderate results for physiotherapists (68.0%) and PD organizations (72.0%) and lower results for PD specialist nurses (26.0%), occupational therapists (23.0%), and counselors (27.0%). Support provided by neurologists and PD specialists was considered to be ‘very helpful’ by 59.0 and 55.7%, respectively, whilst only 31.8% of respondents gave such favorable ratings to GPs. Funding of services was variable across Europe.

Conclusions

These data demonstrate the challenges faced by PD patients in accessing the adequate care and support required throughout the course of their disease. These findings can assist healthcare professionals and policymakers in improving access to support services for patients and their families across Europe.

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