Objective: The goal of this study is to validate the Shame in PARKinson’s disease (SPARK) Scale [1] which identifies the presence, the extent and some factors related with shame and embarassement in Parkinson’s disease (PD).

Background: Shame and embarrassment represent a major cause of quality of life (QoL) impairment in PD. The SPARK has recently been developed to detect shame in people with PD. Its validation will give a reliable tool for physicians and researchers to measure the severity of shame as well as to better understand the factors involved in shame related to PD.

Method: This international, multi-center, cross-sectional study recruited PD patients from movement disorders clinics. Together with socio-demographic characteristics and PD treatment data, the SPARK scale, composed of 33 items grouped in 5 subscales (PD symptoms (motor and non-motor), increased physical dependence, deterioration of body image, impact on self-esteem, level of stigma), was administered. Other assessments included: Hoehn & Yahr (HY) stage, QUICK/WOQ-19 scale, MDS-UPDRS, PDQ-8, Stigma Scale for Chronic Illness (SSCI-8) and Neuropsychiatric Fluctuations Scale (NFS). Main psychometric properties were calculated: data quality and acceptability (skewness, floor and ceiling effects), reliability (internal consistency and test-retest in 40 patients) and construct and internal validity.

Results: 127 patients (61% men, mean age: 63.2; mean PD duration: 9.1; median HY stage: 2) were included of which 79 had motor fluctuations (PwF, score>1 in QUICK/WOQ-19 scale) and 48 did not fluctuate (PnF). The mean SPARK total scores were: 29.9 (standard deviation, SD: 19.5) for PwF in Off; 22.7 (SD: 18.8) for PwF in On; and 11.6 (SD: 11.3) for PnF (p<0.001). Skewness was satisfactory for most SPARK subscales and total score, and floor and ceiling effects were absent in the total score. Regarding internal consistency, Cronbach’s alpha was >0.80 in all subscales. For test-retest reliability, the intra-class correlation coefficient was >0.70 for all subscales and reached 0.89 for total score. The SPARK total correlated 0.11 to 0.45 with MDS-UPDRS; 0.61 with PDQ-8; 0.60 with SSCI-8; and 0.61 with NFS-On subscale. SPARK subscales correlated 0.46 to 0.83 between them.

Conclusion: The preliminary results suggest the SPARK is a useful, reliable and valid tool for the assessment of embarrassment and shame in patients with PD.

References: 1. Fleury V, Catalano Chiuvé S, Forjaz MJ, Di Marco M, Messe M, Debove I, Angulo J, Hariz GM, Burkhard PR, Martinez-Martin P, Rodriguez-Blazquez C, Krack P. Embarrassment and Shame in People With Parkinson’s Disease: A New Tool for Self-Assessment. Front Neurol. 2020 Jul 31;11:779. doi: 10.3389/fneur.2020.00779.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/preliminary-results-of-the-validation-study-of-the-shame-in-parkinsons-disease-spark-scale/