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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, Sarah, Merritt, Rowena K., Rascol, O., Graham, L. (2018) Experience of care for Parkinson's disease in European countries: A survey by the European Parkinson's Disease Association. European Journal of Neurology, 25 (12). 1410-e120. ISSN 1351-5101. (doi:10.1111/ene.13738)

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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.

Item Type: Article
DOI/Identification number: 10.1111/ene.13738
Uncontrolled keywords: Parkinson's disease; patient-reported outcome; satisfaction; care; patient experience
Subjects: H Social Sciences
H Social Sciences > HM Sociology
R Medicine
R Medicine > R Medicine (General)
Divisions: Faculties > Social Sciences > School of Social Policy Sociology and Social Research
Faculties > Social Sciences > School of Social Policy Sociology and Social Research > Centre for Health Services Studies
Depositing User: Rowena Merritt
Date Deposited: 13 Jul 2018 13:03 UTC
Last Modified: 25 Jun 2019 23:00 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/67613 (The current URI for this page, for reference purposes)
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