001008540 001__ 1008540 001008540 005__ 20230929112536.0 001008540 0247_ $$2doi$$a10.3233/JPD-230071 001008540 0247_ $$2ISSN$$a1877-7171 001008540 0247_ $$2ISSN$$a1877-718X 001008540 0247_ $$2datacite_doi$$a10.34734/FZJ-2023-02377 001008540 0247_ $$2pmid$$a37334621 001008540 0247_ $$2WOS$$aWOS:001044537500014 001008540 037__ $$aFZJ-2023-02377 001008540 082__ $$a610 001008540 1001_ $$0P:(DE-HGF)0$$aStopic, Vasilija$$b0$$eCorresponding author 001008540 245__ $$aParkinson’s Disease Stigma Questionnaire (PDStigmaQuest): Development and Pilot Study of a Questionnaire for Stigma in Patients with Idiopathic Parkinson’s Disease 001008540 260__ $$aAmsterdam$$bIOS Press$$c2023 001008540 3367_ $$2DRIVER$$aarticle 001008540 3367_ $$2DataCite$$aOutput Types/Journal article 001008540 3367_ $$0PUB:(DE-HGF)16$$2PUB:(DE-HGF)$$aJournal Article$$bjournal$$mjournal$$s1693473845_15662 001008540 3367_ $$2BibTeX$$aARTICLE 001008540 3367_ $$2ORCID$$aJOURNAL_ARTICLE 001008540 3367_ $$00$$2EndNote$$aJournal Article 001008540 520__ $$aAbstractBackground: 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. 001008540 536__ $$0G:(DE-HGF)POF4-5251$$a5251 - Multilevel Brain Organization and Variability (POF4-525)$$cPOF4-525$$fPOF IV$$x0 001008540 536__ $$0G:(GEPRIS)431549029$$aDFG project 431549029 - SFB 1451: Schlüsselmechanismen normaler und krankheitsbedingt gestörter motorischer Kontrolle (431549029)$$c431549029$$x1 001008540 536__ $$0G:(GEPRIS)491111487$$aDFG project 491111487 - Open-Access-Publikationskosten / 2022 - 2024 / Forschungszentrum Jülich (OAPKFZJ) (491111487)$$c491111487$$x2 001008540 588__ $$aDataset connected to CrossRef, Journals: juser.fz-juelich.de 001008540 7001_ $$0P:(DE-HGF)0$$aJost, Stefanie T.$$b1 001008540 7001_ $$0P:(DE-HGF)0$$aBaldermann, Juan Carlos$$b2 001008540 7001_ $$0P:(DE-HGF)0$$aPetry-Schmelzer, Jan Niklas$$b3 001008540 7001_ $$0P:(DE-Juel1)131720$$aFink, Gereon R.$$b4 001008540 7001_ $$0P:(DE-HGF)0$$aDembek, Till A.$$b5 001008540 7001_ $$0P:(DE-HGF)0$$aDafsari, Haidar S.$$b6 001008540 7001_ $$0P:(DE-HGF)0$$aKessler, Josef$$b7 001008540 7001_ $$0P:(DE-Juel1)131613$$aBarbe, Michael T.$$b8 001008540 7001_ $$0P:(DE-HGF)0$$aSauerbier, Anna$$b9 001008540 773__ $$0PERI:(DE-600)2599550-9$$a10.3233/JPD-230071$$gp. 1 - 11$$n5$$p829-839$$tJournal of Parkinson's Disease$$v13$$x1877-7171$$y2023 001008540 8564_ $$uhttps://juser.fz-juelich.de/record/1008540/files/jpd_2023_13-5_jpd-13-5-jpd230071_jpd-13-jpd230071.pdf$$yOpenAccess 001008540 909CO $$ooai:juser.fz-juelich.de:1008540$$pdnbdelivery$$pdriver$$pVDB$$popen_access$$popenaire 001008540 9101_ $$0I:(DE-588b)5008462-8$$6P:(DE-Juel1)131720$$aForschungszentrum Jülich$$b4$$kFZJ 001008540 9131_ $$0G:(DE-HGF)POF4-525$$1G:(DE-HGF)POF4-520$$2G:(DE-HGF)POF4-500$$3G:(DE-HGF)POF4$$4G:(DE-HGF)POF$$9G:(DE-HGF)POF4-5251$$aDE-HGF$$bKey Technologies$$lNatural, Artificial and Cognitive Information Processing$$vDecoding Brain Organization and Dysfunction$$x0 001008540 9141_ $$y2023 001008540 915__ $$0LIC:(DE-HGF)CCBYNC4$$2HGFVOC$$aCreative Commons Attribution-NonCommercial CC BY-NC 4.0 001008540 915__ $$0StatID:(DE-HGF)0113$$2StatID$$aWoS$$bScience Citation Index Expanded$$d2022-11-25 001008540 915__ $$0StatID:(DE-HGF)0510$$2StatID$$aOpenAccess 001008540 915__ $$0StatID:(DE-HGF)0160$$2StatID$$aDBCoverage$$bEssential Science Indicators$$d2022-11-25 001008540 915__ $$0StatID:(DE-HGF)0200$$2StatID$$aDBCoverage$$bSCOPUS$$d2023-08-24 001008540 915__ $$0StatID:(DE-HGF)0300$$2StatID$$aDBCoverage$$bMedline$$d2023-08-24 001008540 915__ $$0StatID:(DE-HGF)0501$$2StatID$$aDBCoverage$$bDOAJ Seal$$d2023-06-12T10:39:05Z 001008540 915__ $$0StatID:(DE-HGF)0500$$2StatID$$aDBCoverage$$bDOAJ$$d2023-06-12T10:39:05Z 001008540 915__ $$0StatID:(DE-HGF)0030$$2StatID$$aPeer Review$$bDOAJ : Anonymous peer review, Double anonymous peer review$$d2023-06-12T10:39:05Z 001008540 915__ $$0StatID:(DE-HGF)0199$$2StatID$$aDBCoverage$$bClarivate Analytics Master Journal List$$d2023-08-24 001008540 915__ $$0StatID:(DE-HGF)0150$$2StatID$$aDBCoverage$$bWeb of Science Core Collection$$d2023-08-24 001008540 915__ $$0StatID:(DE-HGF)0100$$2StatID$$aJCR$$bJ PARKINSON DIS : 2022$$d2023-08-24 001008540 915__ $$0StatID:(DE-HGF)0600$$2StatID$$aDBCoverage$$bEbsco Academic Search$$d2023-08-24 001008540 915__ $$0StatID:(DE-HGF)0030$$2StatID$$aPeer Review$$bASC$$d2023-08-24 001008540 915__ $$0StatID:(DE-HGF)9905$$2StatID$$aIF >= 5$$bJ PARKINSON DIS : 2022$$d2023-08-24 001008540 920__ $$lyes 001008540 9201_ $$0I:(DE-Juel1)INM-3-20090406$$kINM-3$$lKognitive Neurowissenschaften$$x0 001008540 980__ $$ajournal 001008540 980__ $$aVDB 001008540 980__ $$aUNRESTRICTED 001008540 980__ $$aI:(DE-Juel1)INM-3-20090406 001008540 9801_ $$aFullTexts