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.

中文翻译：

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帕金森氏病患者的尴尬和羞耻感：一种自我评估的新工具。

与帕金森氏病（PD）相关的羞耻和尴尬在临床实践中很少得到解决，也没有在神经科学研究中进行研究，部分原因是因为没有特定的工具可以在PD中检测到它们。目的：开发一种与PD或其治疗相关的羞耻和尴尬自我评估工具，以迅速识别PD中这两种情绪的存在和严重程度。方法：从支持组和访谈中PD患者的意见收集中确定和选择相关项目。在文献综述之后，添加了其他几个项目。随后，分两个阶段进行了初步研究，以识别不明确的项目和遗漏，并获得有关新量表（SPARK）的可接受性，可靠性，有效性和相关性的初步数据。结果：共有105名PD患者入选了该研究。据报道，有85％的患者感到尴尬，而有26％的患者感到羞耻。15％的患者没有描述任何羞耻或尴尬。平均而言，这两种情绪的强度较低，在SPARK项目和分量表中具有明显的底线效应。但是，SPARK总分的个体间差异非常重要（99中的1-84）。数据的可接受性和质量令人满意，没有地板或天花板的影响（各占2.9％）或缺少数据。内部得分的整体一致性（克伦巴赫α）为0.94，而分量表的内部一致性为0.73-0.87。该量表与≥0.60的仪器测量相关结构相关。内容有效性令人满意。SPARK总分与健康相关的生活质量受损密切相关（rS = 0.81），感到尴尬或羞愧的倾向（分别为rS = 0.68和0.66），焦虑（rS = 0.72）和抑郁（rS = 0.63）水平。在SPARK总分和冷漠之间（rS = 0.46）和针对避免伤害的更明显的人格特质（rS = 0.46）之间观察到了中度到高相关性。在性别，受教育程度，PD持续时间，Hoehn和Yahr阶段或PD表型方面，SPARK得分均无显着差异。结论：对心理测量特性的初步分析表明，SPARK可以作为评估PD羞耻和尴尬的可接受且可靠的工具。SPARK可以帮助医疗保健专业人员识别和表征PD引起的羞辱和尴尬。在SPARK总分和冷漠之间（rS = 0.46）和针对避免伤害的更明显的人格特质（rS = 0.46）之间观察到了中度到高相关性。在性别，受教育程度，PD持续时间，Hoehn和Yahr阶段或PD表型方面，SPARK得分均无显着差异。结论：对心理测量特性的初步分析表明，SPARK可以作为评估PD羞耻和尴尬的可接受且可靠的工具。SPARK可以帮助医疗保健专业人员识别和表征PD引起的羞辱和尴尬。在SPARK总分和冷漠之间（rS = 0.46）和针对避免伤害的更明显的人格特质（rS = 0.46）之间观察到了中度到高相关性。在性别，受教育程度，PD持续时间，Hoehn和Yahr阶段或PD表型方面，SPARK得分均无显着差异。结论：对心理测量特性的初步分析表明，SPARK可以作为评估PD羞耻和尴尬的可接受且可靠的工具。SPARK可以帮助医疗保健专业人员识别和表征PD引起的羞辱和尴尬。Hoehn和Yahr阶段或PD表型。结论：对心理测量特性的初步分析表明，SPARK可以作为评估PD羞耻和尴尬的可接受且可靠的工具。SPARK可以帮助医疗保健专业人员识别和表征PD引起的羞辱和尴尬。Hoehn和Yahr阶段或PD表型。结论：对心理测量特性的初步分析表明，SPARK可以作为评估PD羞耻和尴尬的可接受且可靠的工具。SPARK可以帮助医疗保健专业人员识别和表征PD引起的羞辱和尴尬。