The Voice of the Parkinson Customer

Quality of care is becoming increasingly important in the field of movement disorders. Patient-centeredness is a crucial element of quality of care, but has thus far received limited attention regarding the treatment of movement disorder syndromes. As a first step towards patient-centered care in Parkinson's disease (PD), we explored the unmet needs of PD patients and their informal caregivers. Eight focus group discussions involving 40 PD patients (mean age 62 years, Hoehn & Yahr stage 1-3) and 20 informal caregivers (mean age 63 years) were organized to explore the experiences in relation to patient-centered care. The key elements of patient-centeredness - as defined by the Picker Institute and the World Health Organization - were used as a framework for discussion and qualitative analysis. Patients and informal caregivers desired more emotional support from healthcare professionals, and wanted more active involvement in clinical decision making, but currently lacked sufficient information to do so. Participants also missed the tools to find professionals with PD expertise. Finally, they identified a lack of multidisciplinary collaboration as a major bottleneck in the current healthcare system. We identified various unmet needs among PD patients and informal caregivers. These joint experiences represent a disease-specific model of patient-centeredness for PD, which can assist healthcare professionals in implementing patient-centered care tailored to the preferences of each individual patient. The present findings will be used to construct a patient-centeredness questionnaire for PD that will clarify the quality of care from a patient's perspective. Copyright © 2011 Elsevier Ltd. All rights reserved.

Background and purpose The 1997 European Parkinson’s Disease Association’s (EPDA) Charter for People with Parkinson’s disease (PD) outlines their rights in terms of standards of care. It states that all patients have the right to: be referred to a doctor with a special interest in PD; receive an accurate diagnosis; have access to support services; receive continuous care; and take part in managing their illness. Move for Change is a three-part series of pan-European patient surveys based on this Charter. Methods This first survey, consisting of 23 questions, focusing on the initial two points of the Charter, was administered online through the EPDA and affiliated patient associations’ Web sites. Of 2149 forms received from 35 European countries, 2068 (96.2%) were analyzed, with the remainder excluded, mainly due to incomplete responses. Results The majority of patients were diagnosed within 2 years from the onset of first symptoms (82.7%; range, <1 year to ≥5 years). In relation to diagnosis delivery, 45.3% of patients stated that it was ‘poor’ or ‘very poor’. During the 2 years following diagnosis, 43.8% of respondents had never seen a PD specialist. Care was usually overseen by generically active neurologists (92.5%) or family doctors (81.0%), with considerable overlap between the two. Conclusions These data highlight challenges that patients with PD face during the period of diagnosis, despite introduction of the Charter. These findings can assist healthcare professionals and policy makers in improving the level of care for patients and their families across Europe, and we offer suggestions about how this can be achieved.