Self-perceived stigma in Parkinson’s Disease in an online sample: Comparison with in-person sample, role of anxiety, and relative utility of four measures of stigma perception

Abstract

Objective

Persons with Parkinson’s disease (PwPD) experience motor and non-motor symptoms that may elicit stigmatization. We investigated whether online assessment would replicate in-person findings of younger age and depression as predictors of stigma perception. We further assessed the predictive value of anxiety, and compared predictors across four stigma measures.

Methods

The online study (n = 347), like the earlier in-person study (n = 362), used the Parkinson’s Disease Questionnaire stigma subscale (PDQ-39_stigma). It also assessed anxiety and added the Stigma Scale for Chronic Illness (SSCI), Stigmatization Scale, and Mental Health Consumers’ Experience of Stigma Scale. We correlated stigma perception scores with demographic/clinical characteristics and conducted hierarchical regression and mediation analyses.

Results

Online and in-person predictors of stigma perception with the PDQ-39_stigma included younger age (men) and depression (men, women). Depression mediated the relation between stigma perception and motor experiences of daily living (EDLs). In the online sample, when anxiety was added, it predicted stigma perception (PDQ-39_stigma, SSCI) and mediated the relation between stigma and both motor and non-motor EDLs (PDQ-39_stigma). For all four stigma-perception scales, younger age predicted scores. Multiple additional predictors of PDQ-39_stigma and SSCI scores suggest their utility relative to the other two scales. Conclusions: Younger age and depression predicted self-perceived stigma in online and in-person samples, indicating the cross-modal utility of the measure, PDQ-39_stigma. In the online sample, anxiety also predicted stigma perception per the PDQ-39_stigma and SSCI. We recommend both measures and note that treating depression and anxiety may be important especially in younger PwPD to reduce self-perceived stigma.

Keywords:

• Anxiety
• depression
• gender
• Parkinson’s disease
• stigma

Acknowledgements

We are grateful to the individuals who participated in this study. We thank the members of the BOSS-PD research team who assisted in its design and execution and engaged in helpful discussions, including Joshua Fox-Fuller, Ryan Piers, Rini Kaplan, Celina Pluim McDowell, Nishaat Mukadam, Emma Weizenbaum, Samia Islam, Luke Poole, Juliana Wall, Tara Singh, Holly Klecha, and Truley Juneau, and we thank Luis Dominguez for survey development. We acknowledge our additional collaborators on the in-person study that motivated the present online study: Terry Ellis, Gammon Earhart, Matthew Ford, and Leland Dibble, Marie Saint-Hilaire, Cathi Thomas, Karina Stavitsky Gilbert, and Abhishek Jaywant.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

De-identified data are available from the corresponding author upon reasonable request.

Additional information

Funding

There are no funding sources to disclose for the present study.