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Review
. 2023;13(5):829-839.
doi: 10.3233/JPD-230071.

Parkinson's Disease Stigma Questionnaire (PDStigmaQuest): Development and Pilot Study of a Questionnaire for Stigma in Patients with Idiopathic Parkinson's Disease

Vasilija Stopic  1 , Stefanie T Jost  1 , Juan Carlos Baldermann  1   2 , Jan Niklas Petry-Schmelzer  1 , Gereon R Fink  1   3 , Till A Dembek  1 , Haidar S Dafsari  1 , Josef Kessler  1 , Michael T Barbe  1 , Anna Sauerbier  1   4
Affiliations
Review

Parkinson's Disease Stigma Questionnaire (PDStigmaQuest): Development and Pilot Study of a Questionnaire for Stigma in Patients with Idiopathic Parkinson's Disease

Vasilija Stopic et al. J Parkinsons Dis. 2023.

Abstract

Background: Stigma is significant in Parkinson's disease (PD). However, no specific tool is available to assess stigma in PD comprehensively.

Objective: This pilot study aimed to develop and test a stigma questionnaire specific to PD patients (PDStigmaQuest).

Methods: Based on a literature review, clinical experience, expert consensus, and patients' feedback, we developed the preliminary, patient-completed PDStigmaQuest in German language. It included 28 items covering five stigma domains: uncomfortableness, anticipated stigma, hiding, experienced stigma, and internalized stigma. In this pilot study, 81 participants (PD patients, healthy controls, caregivers, and health professionals) were included to investigate the acceptability, feasibility, comprehensibility, and psychometric properties of the PDStigmaQuest.

Results: The PDStigmaQuest showed 0.3% missing data points for PD patients and 0.4% for controls, suggesting high data quality. Moderate floor effects, but no ceiling effects were found. In the item analysis, most items met the standard criteria of item difficulty, item variance, and item-total correlation. Cronbach's alpha was > 0.7 for four of five domains. PD patients' domain scores were significantly higher than healthy controls' for uncomfortableness, anticipated stigma, and internalized stigma. Feedback to the questionnaire was predominantly positive.

Conclusion: Our results indicate that the PDStigmaQuest is a feasible, comprehensive, and relevant tool to assess stigma in PD and helps to understand the construct of stigma in PD further. Based on our results, the preliminary version of the PDStigmaQuest was modified and is currently validated in a larger population of PD patients for use in clinical and research settings.

Keywords: Stigma; pilot study; quality of life; questionnaire development.

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Conflict of interest statement

Vasilija Stopic is funded by the Advanced Cologne Clinician Scientist program of the Medical Faculty of the University of Cologne and will receive funding from the Prof. Klaus Thiemann Foundation.

Stefanie T. Jost was funded by the Prof. Klaus Thiemann Foundation.

Juan Carlos Baldermann was funded by the Else Kroener-Fresenius-Stiftung (grant number 2022 EKES.23) and receives funding by the German Research Foundation (project ID 431549029–C07, CRC-1451).

Jan Niklas Petry-Schmelzer is funded by the Cologne Clinician Scientist Program (CCSP)/ Faculty of Medicine/ University of Cologne; funded by the German Research Foundation (DFG, FI 773/15-1).

Gereon R. Fink serves as an editorial board member of Cortex, Neurological Research and Practice, NeuroImage: Clinical, Zeitschrift fur Neuropsychologie, and DGNeurologie; receives royalties from the publication of the books Funktionelle MRT in Psychiatrie und Neurologie, Neurologische Differentialdiagnose, and SOP Neurologie; received honoraria for speaking engagements from Bayer, Desitin, Ergo DKV, Forum fur medizinische Fortbildung FomF GmbH, GSK, Medica Academy Messe Dusseldorf, Medicbrain Healthcare, Novartis, Pfizer, and Sportarztebund NRW.

Till A. Dembek received personal fees from Medtronic, personal fees from Boston Scientific, outside the submitted work.

Haidar S. Dafsari was funded by the EU Joint Programme – Neurodegenerative Disease Research (JPND), the Prof. Klaus Thiemann Foundation in the German Society of Neurology, the Felgenhauer Foundation, the KoelnFortune program of the Medical Faculty of the University of Cologne, and has received honoraria by Boston Scientific, Medtronic, Bial, Kyowa Kirin, Abbvie, Everpharma, and Stadapharm.

Josef Kessler has no conflicts of interest to report.

Michael T. Barbe received speaker’s honoraria from Medtronic, Boston Scientific, Abbott (formerly St. Jude), GE Medical, UCB, Apothekerverband Koln e.V. and Bial as well as research funding from the Felgenhauer-Stiftung, Forschungspool Klinische Studien (University of Cologne), Horizon 2020 (Gondola), Medtronic (ODIS), and Boston Scientific and advisory honoraria for the IQWIG.

Anna Sauerbier is funded by the Gusyk program and the Advanced Cologne Clinician Scientist program of the Medical Faculty of the University of Cologne and has received funding from the Prof. Klaus Thiemann Foundation.

Figures

Fig. 1
Fig. 1
Development process of the PDStigmaQuest tested in the pilot study. Based on literature research, focus groups and email contacts with experts in stigma and PD as well as input from patients with PD, a preliminary PDStigmaQuest was developed in German language to be tested in the pilot study. aThe experts were health professionals and researchers, namely neurologists, clinical and research fellows, psychologists, study nurses, occupational therapists, speech therapists, and physiotherapists. PD, Parkinson’s disease; PDStigmaQuest, Parkinson’s Disease Stigma Questionnaire.
Fig. 2
Fig. 2
Descriptive statistics of items answered by patients with Parkinson’s disease and healthy controls in the different PDStigmaQuest domains. Domain scores are presented as percentage of the maximum domain score. Mann-Whitney U tests were calculated between patients with PD and controls. Red dots represent outliners by healthy controls. In the domain hiding, no comparison was made as no items applied to healthy controls. No boxplot can be seen for the domain anticipated stigma in healthy controls as all values in the box were 0. 11 item; 24 items; *p < 0.05. PD, Parkinson’s disease; PDStigmaQuest, Parkinson’s Disease Stigma Questionnaire.
See this image and copyright information in PMC

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