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Open Access 01-11-2015 | Original Communication

Capturing patients’ experiences to change Parkinson’s disease care delivery: a multicenter study

Authors: Martijn van der Eijk, Marjan J. Faber, Bart Post, Michael S. Okun, Peter Schmidt, Marten Munneke, Bastiaan R. Bloem

Published in: Journal of Neurology | Issue 11/2015

Abstract

Capturing patients’ perspectives has become an essential part of a quality of care assessment. The patient centeredness questionnaire for PD (PCQ-PD) has been validated in The Netherlands as an instrument to measure patients’ experiences. This study aims to assess the level of patient centeredness in North American Parkinson centers and to demonstrate the PCQ-PD’s potential as a quality improvement instrument. 20 Parkinson Centers of Excellence participated in a multicenter study. Each center asked 50 consecutive patients to complete the questionnaire. Data analyses included calculating case mix-adjusted scores for overall patient centeredness (scoring range 0–3), six subscales (0–3), and quality improvement (0–9). Each center received a feedback report on their performance. The PCQ-PD was completed by 972 PD patients (median 50 per center, range 37–58). Significant differences between centers were found for all subscales, except for emotional support (p < 0.05). The information subscale (mean 1.62 SD 0.62) and collaboration subscale (mean 2.03 SD 0.58) received the lowest experience ratings. 14 centers (88 %) who returned the evaluation survey claimed that patient experience scores could help to improve the quality of care. Nine centers (56 %) utilized the feedback to change specific elements of their care delivery process. PD patients are under-informed about critical care issues and experience a lack of collaboration between healthcare professionals. Feedback on patients’ experiences facilitated Parkinson centers to improve their delivery of care. These findings create a basis for collecting patients’ experiences in a repetitive fashion, intertwined with existing quality of care registries.

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Title: Capturing patients’ experiences to change Parkinson’s disease care delivery: a multicenter study
Authors: Martijn van der Eijk
Marjan J. Faber
Bart Post
Michael S. Okun
Peter Schmidt
Marten Munneke
Bastiaan R. Bloem
Publication date: 01-11-2015
Publisher: Springer Berlin Heidelberg
Published in: Journal of Neurology / Issue 11/2015
Print ISSN: 0340-5354
Electronic ISSN: 1432-1459
DOI: https://doi.org/10.1007/s00415-015-7877-2

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Capturing patients’ experiences to change Parkinson’s disease care delivery: a multicenter study

Abstract

Keynote webinar | Spotlight on sleep in brain health

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