Embarrassment and Shame in People With Parkinson's Disease: A New Tool for Self-Assessment

Article Article scientifique Article Embarrassment and Shame in People With Parkinson's Disease: A New Tool for Self-Assessment eng 2020 author Fleury Vanessa 840771 author Catalano Chiuvé Sabina author Forjaz Maria João author Di Marco Mariagrazia 768956 author Messe Maria Irena 909806 author Debove Ines author Angulo Julio author Hariz Gun-Marie author Burkhard Pierre 0000-0002-7459-5778 92389 author Martinez-Martin Pablo author Rodriguez-Blazquez Carmen author Krack Paul 779 10.3389/fneur.2020.00779 32849230 1664-2295 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7411180/ Shame and embarrassment related to Parkinson's disease (PD) are rarely addressed in clinical practice nor studied in neuroscience research, partly because no specific tool exists to detect them in PD. Objective: To develop a self-applied assessment tool of shame and embarrassment specifically related to PD or its treatment, to promptly identify the presence and severity of these two emotions in PD. Methods: Identification and selection of relevant items were obtained from the collection of PD patients' opinions during support groups and interviews. Several further items were added following a literature review. Subsequently, a two-phase pilot study was performed for identification of ambiguous items and omissions, and to obtain preliminary data on acceptability, reliability, validity and relevance of the new scale (SPARK). Results: A total of 105 PD patients were enrolled in the study. Embarrassment was reported in 85% of patients, while shame was present in 26%. Fifteen percent of patients did not describe any shame or embarrassment. On average, the intensity of these two emotions was low with a marked floor effect in SPARK items and subscales. However, SPARK total score inter-individual variability was important (range 1-84 out of 99). Acceptability and quality of data were satisfactory with no floor or ceiling effects (2.9% each) or missing data. Internal consistency (Cronbach's alpha) was 0.94 for total score and 0.73-0.87 for subscales. The scale correlated ≥0.60 with instruments measuring related constructs. Content validity was satisfactory. SPARK total score strongly correlated with impaired health-related quality of life (rS = 0.81), the propensity to feel embarrassed or ashamed (rS = 0.68 and 0.66, respectively), and anxiety (rS = 0.72) and depression (rS = 0.63) levels. Moderate to high correlations were observed between SPARK total score and apathy (rS = 0.46) and a more pronounced personality trait directed toward harm avoidance (rS = 0.46). No significant differences in SPARK scores were found by sex, education level, PD duration, Hoehn and Yahr stages or PD phenotype. Conclusion: Preliminary analysis of psychometric properties suggests that SPARK could be an acceptable and reliable instrument for assessing shame and embarrassment in PD. SPARK could help healthcare professionals to identify and characterize PD-induced shame and embarrassment. Parkinson's disease Shame Embarrassment Questionnaire Non-motor symptoms Dewey 616.8 Dewey 618 217 Centre de recherche clinique 201 61 Département des neurosciences cliniques 226 false 124 Groupe Pierre Burkhard (neurologie) 154 Frontiers in Neurology 11 17e90a68-0b7b-4b06-b631-82570b99fb64 Article (Published version) Public fneur-11-00779.pdf 949872 application/pdf CC BY openAccess Faculté de médecine / Centre de recherche clinique Faculté de médecine / Section de médecine clinique / Département des neurosciences cliniques

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