Abstract
INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
