Health care experiences of people with Parkinson’s disease in Australia

BACKGROUND: Little is known about the health care experiences of people with Parkinson’s disease (PwP) living in Australia. Exploring health care experiences can provide insight into service gaps which can then help direct quality improvement, such as improving communication between patients and health professionals. METHODS: This study aimed to examine the health care experiences of a sample of PwP living in Australia using the Patient-Centered Questionnaire for Parkinson’s disease (PCQ-PD). Participants were recruited from four sources located in Victoria, Australia: (1) a metropolitan Movement Disorders Program (Group 1); (2) metropolitan based movement disorder neurologists working as sole practitioners and not within multidisciplinary teams (Group 2); (3) a regional based multidisciplinary PD program (Group 3); and (4) PD support groups in regional and rural Victorian towns without PD specialist programs (Group 4). Scores derived from the PCQ-PD included the overall patient-centered score (OPS), six sub-scale experience scores (SES) and the quality improvement scores (QIS). Health care experiences were compared between Groups 1, 2, 3 and 4 and multivariate linear regression models were used to explore factors contributing to patient-centeredness. RESULTS: 227 participants reported a mean (SD) OPS score of 1.8 (SD 0.5) with no significant differences between groups. The rating for the Tailored Information subscale was low, (mean 1.3, SD 0.5), with Group 2 having a significantly lower score, 1.1 (SD 0.5), compared to Group 1, 1.4 (SD 0.5) (p = 0.048). Experiences of Continuity of Care and Collaboration of Professionals were rated significantly lower by Group 2, 1.3 (SD 1.0) compared to Groups 1, 1.8 (SD 0.9) (p = 0.018) and 3, 2.1 (SD 0.8) (p = 0.002). Care aspects related to the Tailored Information subscale were prioritised for improvement by all groups. The main predictors of positive health care experiences were disease duration (coeff 0.02; 95% CI 0.00, 0.04) and living with another person (coeff 0.27: 95% CI 0.03, 0.51). CONCLUSION: This sample of participants with PD had poor experiences of several aspects of care known to be important in the provision of quality PD care. They prioritised the improvement of personalised health care information and better continuity of care and collaboration between health professionals. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12877-023-04142-3.