English Validation of the PDStigmaQuest
Research type
Research Study
Full title
English Validation of the Parkinson’s Disease Stigma Questionnaire (PDStigmaQuest)
IRAS ID
327719
Contact name
Lucia Batzu
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
2 years, 0 months, 0 days
Research summary
Idiopathic Parkinson's is the second most common neurodegenerative disease and is characterized by the cardinal motor symptoms of bradykinesia, rigor, tremor, and postural instability, but also non-motor symptoms such as sweating, cognitive impairment, and incontinence. Idiopathic Parkinson's and its symptoms are accompanied by the stigmatization of patients in everyday life including experiences of labeling, discrimination, or stereotypes. The stigma can have a significant impact on the quality of life of patients. Thus, there is a need to objectively and holistically assess the stigma in patients with idiopathic Parkinson's. However, this need cannot be met by the existing questionnaires for the assessment of stigma. To date, for patients with idiopathic Parkinson's, only cross-disease questionnaires have been used or a stigma subscale of a questionnaire, which, however, consists of only 4 questions. Since stigma in patients with idiopathic Parkinson's is a complex construct that differs from stigma of other diseases, it should be addressed precisely and extensively.
In this study, the English version of a new patient-completed questionnaire that addresses the different components of stigma in patients with idiopathic Parkinson's (PDStigmaQuest) should be validated. To date, only the original German version has been validated. Following internationally established guidelines, the final German PDStigmaQuest underwent a cross-cultural adaptation in English language. In the current proposal, we aim to validate the adapted English version of the PDStigmaQuest in people with PD in an English-speaking population for international and subsequent worldwide use of the English PDStigmaQuest.
For validation, besides the PDStigmaQuest, other scales/questionnaires for motor and non-motor symptoms are assessed. The PDStigmaQuest can be used to adequately capture stigma in patients with idiopathic Parkinson's and to explore the change across different stages of the disease. In addition, the association of stigma in idiopathic Parkinson's with (non)motor symptoms and quality of life can be explored.
REC name
Yorkshire & The Humber - Sheffield Research Ethics Committee
REC reference
24/YH/0199
Date of REC Opinion
20 Aug 2024
REC opinion
Favourable Opinion