title: 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 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.
authors: Department of Neurology, Radboud Institute of Health Sciences (RIHS), Radboud University Medical Center, Nijmegen, The Netherlands. martijn.vandereijk@radboudumc.nl.
authors: Martijn
authors: M
authors: van der Eijk
authors: Department of Neurology, Radboud Institute of Health Sciences (RIHS), Radboud University Medical Center, Nijmegen, The Netherlands.|Scientific Institute for Quality of Healthcare (IQ Healthcare), Radboud University Medical Center, Nijmegen, The Netherlands.
authors: Marjan J
authors: MJ
authors: Faber
authors: Department of Neurology (935), Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands.
authors: Bart
authors: B
authors: Post
authors: McKnight Brain Institute, UF Health College of Medicine, University of Florida Center for Movement Disorders and Neurorestoration, Gainesville, FL, USA.
authors: Michael S
authors: MS
authors: Okun
authors: National Parkinson Foundation, Miami, FL, USA.
authors: Peter
authors: P
authors: Schmidt
authors: Scientific Institute for Quality of Healthcare (IQ Healthcare), Radboud University Medical Center, Nijmegen, The Netherlands.|Department of Neurology (935), Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands.
authors: Marten
authors: M
authors: Munneke
authors: Department of Neurology (935), Donders Institute for Brain, Cognition and Behaviour, Radboud University Medical Center, Nijmegen, The Netherlands. bas.bloem@radboudumc.nl.
authors: Bastiaan R
authors: BR
authors: Bloem
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003695:Delivery of Health Care / Q000592:standards*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009656:North America; D010300:Parkinson Disease / Q000628:therapy*; D018802:Patient-Centered Care / Q000592:standards*; D011594:Psychometrics / Q000295:instrumentation*; D011787:Quality of Health Care / Q000592:standards*; D011795:Surveys and Questionnaires / Q000592:standards*
keywords: Outcome research; Parkinson’s disease; Patient experiences; Patient-centered care; Quality of life