TY - JOUR
T1 - Health care experiences of people with Parkinson’s disease in Australia
AU - Danoudis, Mary
AU - Soh, Sze Ee
AU - Iansek, Robert
N1 - Funding Information:
This study was supported by a seeding grant from AbbVie Australia. AbbVie Australia had no role in the planning of the study, recruitment, data collection, analysis or writing of the manuscript. The authors were independent from AbbVie.
Funding Information:
We acknowledge AbbVie Australia for their seeding grant for this study. We thank Fight Parkinson’s and the Support Group leaders for promoting this project to their members. In addition we would like to acknowledge the neurologists who promoted this study to their patients and the staff of the Melbourne Movement Disorders Program who assisted with distribution of the questionnaire. We are grateful to all participants who so generously gave of their time to support this study.
Publisher Copyright:
© 2023, The Author(s).
PY - 2023/7/12
Y1 - 2023/7/12
N2 - 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.
AB - 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.
KW - Health Care Experiences
KW - Health Services
KW - Parkinsonism
KW - Parkinson’s disease
KW - Patient-centered care
UR - http://www.scopus.com/inward/record.url?scp=85164541050&partnerID=8YFLogxK
U2 - 10.1186/s12877-023-04142-3
DO - 10.1186/s12877-023-04142-3
M3 - Article
C2 - 37438688
AN - SCOPUS:85164541050
SN - 1471-2318
VL - 23
JO - BMC Geriatrics
JF - BMC Geriatrics
IS - 1
M1 - 430
ER -