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Experience of care for Parkinson's disease in European countries: A survey by the European Parkinson's Disease Association.

Schrag, A; Khan, K; Hotham, S; Merritt, R; Rascol, O; Graham, L; European Parkinson's Disease Association, ; (2018) Experience of care for Parkinson's disease in European countries: A survey by the European Parkinson's Disease Association. Eur J Neurol 10.1111/ene.13738. (In press). Green open access

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Abstract

BACKGROUND: Few studies report on experience of care for Parkinson's disease (PD) from patients' own point of view. METHODS: Analysis of a survey in 11 European countries on self-reported access to services and satisfaction with different aspects of care. RESULTS: 1,775 people with PD (PwP) participated with disease duration ranging from <1 to 42 years. Initial referral to specialists had taken <3 months in most but medication reviews occurred every 3 months in only 10%, every 6 months in 37%, once a year in 40%, and every two years or less frequently in 13%. Waiting times to therapists were usually at ≥4 months. Satisfaction with care was highest for involvement of PwP in decisions (63% of respondents satisfied) and involvement of family/carer (62%) followed by communication with PwP (57%), information received (54%), frequency of treatment reviews (52%), suitability of treatment for the individual condition and circumstances (52%), but lowest for availability and accessibility of treatment when needed (48%) and collaborations between healthcare professionals in delivering care (41% satisfied). The main factors associated with overall satisfaction scores with care were the overall satisfaction with initial consultation (r=0.26, p<0.0001), the sensitivity with which the diagnosis was communicated, the quantity of information provided (both r=0.24, p<0.0001) and the frequency of medication review (r=0.17, p<0.0001). CONCLUSION: More coordinated and responsive care, tailored to the individual, with regular and timely medication reviews and treatment referrals, is likely to improve satisfaction with care in current health care pathways. This article is protected by copyright. All rights reserved.

Type: Article
Title: Experience of care for Parkinson's disease in European countries: A survey by the European Parkinson's Disease Association.
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/ene.13738
Publisher version: https://doi.org/10.1111/ene.13738
Language: English
Additional information: © 2018 The Authors. European Journal of Neurology published by John Wiley & Sons Ltd on behalf of European Academy of Neurology. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
Keywords: Parkinson's disease, care, patient experience, patient-reported outcome, satisfaction
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical and Movement Neurosciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > UCL Queen Square Institute of Neurology > Clinical Neuroscience
URI: http://discovery.ucl.ac.uk/id/eprint/10054471
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