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.Electronic supplementary materialThe online version of this article (doi:10.1007/s00415-015-7877-2) contains supplementary material, which is available to authorized users.
Highlights
In 2001, the National Academy of Medicine introduced six areas to improve the quality of the US healthcare system
This study aims to assess the level of patient centeredness in North American Parkinson centers and to demonstrate the patient centeredness questionnaire for PD (PCQ-PD)’s potential as a quality improvement instrument
The PCQ-PD was completed by 972 PD patients
Summary
In 2001, the National Academy of Medicine introduced six areas to improve the quality of the US healthcare system. These areas were built around the fundamental needs for healthcare, which has to be safe, effective, equitable, timely, efficient, and patient centered [1]. Leading physician (Q13), care coordinator (Q14), awareness of professionals of each other’s involvement (Q15), mutual agreements (Q16), conflicting information (Q17), informed about what professionals discussed regarding your treatment (Q18), cooperation second opinion (Q19), timely referrals (20), collaboration PD nurse specialist and neurologist (Q21), collaboration between physicians (Q22), and fixed contact for questions or complaints (Q25). Patient organizations (Q1), adaptive equipment, home care and facilities (Q2), reliable information (Q3), peer support (Q4), medication use and side effects (Q5), reimbursement of treatment costs (Q6), contact after medication regimen changes (Q7), alternative health therapies (Q8), advanced treatment options (Q9), ability to drive a car (Q10), find health professionals specialized in PD (Q11), and treatment options allied health professionals (Q12)
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