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.

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-39stigma). 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-39stigma 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-39stigma, SSCI) and mediated the relation between stigma and both motor and non-motor EDLs (PDQ-39stigma). For all four stigma-perception scales, younger age predicted scores. Multiple additional predictors of PDQ-39stigma 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-39stigma. In the online sample, anxiety also predicted stigma perception per the PDQ-39stigma 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.

Discordance between Reports of Internalized Symptoms in Persons with Parkinson's Disease and Informants: Results from an Online Survey.

BACKGROUND: Self-report of motor and non-motor symptoms is integral to understanding daily challenges of persons with Parkinson's disease (PwPD). Care partners are often asked to serve as informants regarding symptom severity, raising the question of concordance with PwPD self-reports, especially regarding internalized (not outwardly visible) symptoms. OBJECTIVES: Concordance between PwPD and informant ratings of motor and non-motor symptoms was evaluated across multiple domains. METHODS: In 60 PwPD-informant pairs, we compared ratings on 11 online self-report measures comprising 33 total scores, 2/3 of which represented purely internalized symptoms. For discordant scores, multiple regression analyses were used to examine demographic/clinical predictors. RESULTS: Though concordant on 85% of measures, PwPD endorsed more non-motor symptoms, bodily discomfort, stigma, and motor symptoms than informants. For PwPD, younger age, greater disease severity, and female gender predicted discordance. CONCLUSIONS: Discordance between PwPD and informants on measures assessing symptoms that cannot be outwardly observed may require targeted education.

Side of motor symptom onset predicts sustained attention deficits and motor improvements after attention training in Parkinson's disease.

OBJECTIVE: Parkinson's disease (PD) side of motor symptom onset has been associated with distinct cognitive deficits; individuals with left-side onset (LPD) show more visuospatial impairments, whereas those with right-side onset (RPD) show more verbal impairments. Non-spatial attention is a critical cognitive ability associated with motor functioning that is right hemisphere lateralized but has not been characterized with regard to PD side of onset. We compared individuals with LPD and RPD on non-spatial attention tasks and examined differential responses to a 4-week sustained attention training program. METHOD: Participants included 9 with LPD and 12 with RPD, who performed both brief and extended go/no-go continuous performance tasks and an attentional blink task. Participants also engaged in an at-home sustained attention training program, Tonic and Phasic Alertness Training (TAPAT), 5 days/week for 4 weeks. We assessed cognitive and motor symptoms before and after training, and after a 4-week no-contact period. RESULTS: At baseline, participants with LPD exhibited worse performance than those with RPD on the extended continuous performance task, indicating specific deficits in sustaining attention. Poorer attention was associated with worse clinical motor scores. Notably, side of onset had a significant effect on clinical motor changes after sustained attention training, with only LPD participants improving after training, and 4/9 showing clinically meaningful improvements. CONCLUSIONS: Compared to RPD, participants with LPD had poorer sustained attention pre-training and were more likely to improve on clinical motor functioning after sustained attention training. These findings support mechanistic differences between LPD and RPD and suggest potential differential treatment approaches.

Changes in Apathy, Depression, and Anxiety in Parkinson's Disease from before to during the COVID-19 Era.

Apathy, depression, and anxiety are common non-motor symptoms of Parkinson's disease (PD). Tracking the changes in such symptoms over time would be valuable not only to determine their natural course during the disease, but also to establish the effects of unusual historical events interacting with the natural course. Having collected data on apathy (Apathy Scale), depression (Beck Depression Inventory-II), and anxiety (Parkinson's Anxiety Scale) in a large sample of persons with PD (PwPD) before the beginning of the COVID-19 era, we followed up with these individuals to investigate the changes in their prevalence of apathy, depression, and anxiety across two timepoints (T1 and T2). Of the original 347 participants, 111 responded and provided complete data at T2. The data collection at T1, before COVID-19, occurred between 2017-2018. The data collection at T2 occurred in 2021 and included the same measures, with the addition of the Coronavirus Impact Scale to assess the effects of the pandemic on the individual participants. Over this period, there was a significant increase in apathy, but not in depression or anxiety. Anxiety and depression, but not apathy, were correlated with the impact of COVID-19.

Perceived stigma and quality of life in Parkinson's disease with additional health conditions.

Background: Parkinson's disease (PD) is associated with perceived stigma and affects quality of life (QoL). Additional health conditions may influence these consequences of PD. Aims: This study assessed the impact of health conditions on perceived stigma and QoL in persons with PD. We hypothesised that individuals with more health conditions would report more stigma and poorer QoL. We also examined the contributions of demographic and clinical characteristics to the correlations between health conditions and perceived stigma/QoL. Methods: We identified 196 eligible participants from the Boston University Online Survey Study of Parkinson's Disease and examined their health history, performance on multiple stigma measures, and scores on the 39-item Parkinson's Disease Questionnaire assessing QoL. Results: At least one health condition was reported by 79% of the sample, with a median of 2 and a range of 0-7 health conditions. More perceived stigma and poorer QoL were associated with thyroid disease, depression, anxiety, and the total number of health conditions. These correlations were related to younger age, less education, and earlier disease onset. Other health conditions (high blood pressure, back/leg surgery, headache, cancer/tumours, and heart disease) were not significantly correlated with stigma or QoL. Conclusions: Having more health conditions, or thyroid disease, depression, or anxiety, was associated with more perceived stigma and poorer QoL, with younger age, less education, and earlier disease onset affecting the associations. It is important to consider the burden of health conditions and how they affect persons with PD with specific clinical characteristics.