The Unseen Burden: Uncovering Shame and Its Determinants in Parkinson's Disease.

Background Shame is frequent in Parkinson's disease (PD) and often overlooked.Objective The aim was to assess factors associated with PD-related shame.Methods PD-related shame was measured using the Shame and Embarrassment in PD (SPARK) scale in patients without cognitive impairment. Correlation between personal determinants (demographics, psychological traits [shame/guilt propensity, trait anxiety]), PD-related determinants (PD characteristics; motor, cognitive, and neuropsychiatric symptoms; medication; and health-related quality of life [QoL]), and SPARK was analyzed using multiple correlation analysis and generalized linear mixed models. To describe the cohort's response to shame, data-driven clustering based on SPARK was conducted, and clusters' associations with the determinants were analyzed.Results Forty-seven PD patients were included. PD-related shame correlated with psychological traits (trait anxiety, shame, and guilt propensity), clinical symptoms (dyskinesia, state anxiety, depression, and apathy), and QoL. These determinants explained 79.3% of the total variance in the subsequent linear model analysis, with QoL and anxiety as the strongest covariates of shame. Apathy positively covaried with SPARK self-esteem subscale. Cluster analysis identified 3 patient groups. Highest-intensity shame cluster demonstrated elevated scores on both motor and nonmotor symptom-related shame and was associated with higher levels in anxiety, depression, and apathy, and poorer QoL. The remaining clusters showed a dissociation, with motor symptom-related shame predominating in one and nonmotor symptom-related shame in the other.Conclusions This study provides an in-depth understanding of shame, highlighting its multifactorial nature. Due to its impact on QoL, shame should be addressed in clinical practice through pharmacological/nonpharmacological interventions, targeting both shame and its modifiable determinants. Identifying distinct shame profiles underscores the need for tailored interventions.