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.Electronic supplementary materialThe online version of this article (doi:10.1007/s00415-015-7877-2) contains supplementary material, which is available to authorized users.

Technology‐enabled management of communication and swallowing disorders in Parkinson's disease: a systematic scoping review

“…As alternative service models, individual speech treatment online, hybrid approaches to service, web‐based applications and online group therapy could provide people with PD and their families with choices that support client‐centred care and lifestyle preferences (Van der Eijk et al . ). Further research to support the efficacy of these approaches is needed to establish a technology‐enabled management approach for the speech disorder associated with PD.…”

“…With the next generation of older people preferring to remain independent and living in their own homes for as long as possible (Kahana and Kahana 2014), homebased healthcare will be critical in addressing the needs of the elderly and people with PD (Dorsey et al 2016). Current centre-based models of healthcare have been perceived to be less than adequate by people with PD with respect to patient centredness and exchange of information (Van der Eijk et al 2015). Similarly, Dorsey et al (2016) highlighted the shortcomings of current PD care in relation to safety, efficiency, effectiveness, patient-centeredness and equity.…”

“…Considering the progressive nature of this disease and the need for ongoing maintenance of communication, online group therapy has the potential to be an integral component of a technology-enabled management plan for people with PD. As alternative service models, individual speech treatment online, hybrid approaches to service, web-based applications and online group therapy could provide people with PD and their families with choices that support client-centred care and lifestyle preferences (Van der Eijk et al 2015). Further research to support the efficacy of these approaches is needed to establish a technology-enabled management approach for the speech disorder associated with PD.…”

“…Current centre‐based models of healthcare have been perceived to be less than adequate by people with PD with respect to patient centredness and exchange of information (Van der Eijk et al . ). Similarly, Dorsey et al .…”

Moving Parkinson care to the home

“…9 Despite the limited evidence, focus groups and surveys suggest that individuals with PD want more personalized information from multiple disciplines that is delivered remotely in a timely manner. 9,10 Fifth, PD care is very inefficient. Patients and their caregivers spend hours travelling and waiting in the clinic for routine follow-up appointments.…”