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@ARTICLE{Stopic:1008540,
      author       = {Stopic, Vasilija and Jost, Stefanie T. and Baldermann, Juan
                      Carlos and Petry-Schmelzer, Jan Niklas and Fink, Gereon R.
                      and Dembek, Till A. and Dafsari, Haidar S. and Kessler,
                      Josef and Barbe, Michael T. and Sauerbier, Anna},
      title        = {{P}arkinson’s {D}isease {S}tigma {Q}uestionnaire
                      ({PDS}tigma{Q}uest): {D}evelopment and {P}ilot {S}tudy of a
                      {Q}uestionnaire for {S}tigma in {P}atients with {I}diopathic
                      {P}arkinson’s {D}isease},
      journal      = {Journal of Parkinson's Disease},
      volume       = {13},
      number       = {5},
      issn         = {1877-7171},
      address      = {Amsterdam},
      publisher    = {IOS Press},
      reportid     = {FZJ-2023-02377},
      pages        = {829-839},
      year         = {2023},
      abstract     = {AbstractBackground: 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.},
      cin          = {INM-3},
      ddc          = {610},
      cid          = {I:(DE-Juel1)INM-3-20090406},
      pnm          = {5251 - Multilevel Brain Organization and Variability
                      (POF4-525) / DFG project 431549029 - SFB 1451:
                      Schlüsselmechanismen normaler und krankheitsbedingt
                      gestörter motorischer Kontrolle (431549029) / DFG project
                      491111487 - Open-Access-Publikationskosten / 2022 - 2024 /
                      Forschungszentrum Jülich (OAPKFZJ) (491111487)},
      pid          = {G:(DE-HGF)POF4-5251 / G:(GEPRIS)431549029 /
                      G:(GEPRIS)491111487},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {37334621},
      UT           = {WOS:001044537500014},
      doi          = {10.3233/JPD-230071},
      url          = {https://juser.fz-juelich.de/record/1008540},
}