Exploring Perceptions and Predictors of Shared Decision-making in the Pharmacological Management of Parkinson’s Disease: Insights from Patients and Healthcare Providers
Objective:
This study investigated (1) patient and provider perceptions of SDM in PD pharmacological management and (2) sociodemographic and health literacy predictors of perceived involvement.
Background:
Shared decision-making (SDM) is critical for managing Parkinson’s disease (PD). While most patients express a preference for active involvement in decisions, discrepancies between patient expectations and actual engagement remain. Low health literacy may further limit effective SDM, yet little is known about its role in PD.
Design/Methods:
A cross-sectional survey of patients with PD (n = 210) and healthcare providers prescribing PD medications (n = 80) was conducted across the United States. Participants completed demographics, the 9-item Shared Decision-Making Questionnaire (SDM-Q-9 for patients; SDM-Q-Doc for providers), and the Health Literacy Instrument for Adults (HELIA, patients only). Descriptive statistics, independent t-tests, regression analyses, and ANOVAs were performed.
Results:
Providers reported significantly higher SDM scores (M = 37.8, SD = 6.5) than patients (M = 29.6, SD = 10.4; p < 0.01, Cohen’s d = -0.87), reflecting a large effect size. Among patients, higher education, marital status (married, divorced, widowed), and rural residence were associated with greater SDM-Q-9 scores, whereas age and sex were not significant. In providers, Black/African American ethnicity and residence in the Middle Atlantic or West South Central regions were associated with higher SDM-Q-Doc scores. Linear regression analysis revealed that higher health literacy (HELIA scores) was a strong and significant predictor of greater patient-perceived SDM involvement (SDM-Q-9 scores; β = 0.22, p < 0.01). ANOVA revealed that marital status was the only sociodemographic factor significantly linked to patient SDM scores (p = 0.01).
Conclusions:
These findings highlight the need for tailored interventions, such as PD-specific decision aids and structured communication strategies, that address health literacy gaps and sociodemographic influences, while fostering alignment between patient and provider perceptions to support more equitable, collaborative decision-making in PD care.
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