Patients' Perspective of Comprehensive Parkinson Care in Rural Victoria

METHODS: This descriptive study used a survey to explore health-care experiences. Questionnaires were mailed to participants living in rural Victoria. Eligibility criteria included having a diagnosis of PD or Parkinsonism and sufficient English to respond to the survey. The validated Patient-Centred Questionnaire for PD was used to measure health-care experiences. The questions are grouped accordingly under one of the 6 subscales or domains. Outcomes from the questionnaire included summary experience scores (SES) for 6 subscales; overall patient-centeredness score (OPS); and quality improvement scores (QIS). Secondary outcomes included health-related quality of life using the disease-specific questionnaire PDQ39; disease severity using the Hoehn and Yahr staging tool; and disability using the Movement Disorders Society-Unified Parkinson's Disease Rating Scale, part II. RESULTS: Thirty-nine surveys were returned from the East Gippsland group and 68 from the rural group. The East Gippsland group rated significantly more positive the subscales “empathy and PD expertise,” P=0.02, and “continuity and collaboration of professionals,” P=0.01. The groups did not differ significantly for the remaining 4 subscales (P > 0.05) nor for the OPS (P=0.17). The QIS showed both groups prioritised the health-care aspect “provision of tailored information” for improvement. Quality of life was greater (P < 0.05) and impairment (P=0.012) and disability were less (P=0.002) in the East Gippsland group. CONCLUSION: Participants who received health care from the East Gippsland program had better key health-care experiences along with better QOL and less impairment and disability. Participants prioritised provision of information as needing further improvement.