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

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 Excel-lence 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