Predictors of self-perceived stigma in Parkinson’s disease

OBJECTIVE: The burden of PD extends beyond physical limitations and includes significant psychosocial adjustments as individuals undergo changes to their self-perception and how others perceive them. There is limited quantitative evidence of the factors that contribute to self-perceived stigma, which we addressed in the present study. METHODS: In 362 individuals with PD (157 women, 205 men), self-perceived stigma was measured by the four-item stigma subscale of the Parkinson's Disease Questionnaire (PDQ-39). Hierarchical linear modeling was used to assess predictors of stigma including demographics (age, gender) and disease characteristics: duration, stage (Hoehn & Yahr Scale), motor severity (Unified Parkinson's Disease Rating Scale, UPDRS, Part 3), activities of daily living (UPDRS Part 2), and depression (Geriatric Depression Scale). Predictor variables were chosen based on their significant correlations with the stigma subscale. Further analyses were conducted for men and women separately. RESULTS: For the total sample, the full model accounted for 14% of the variance in stigma perception (p < .001). Younger age and higher depression scores were the only significant predictors (both p < .001). This pattern was also seen for the men in the sample. For the women, only depression was a significant predictor. Depression mediated the relation between stigma and activities of daily living. CONCLUSIONS: Younger age (men) and depression (men and women) were the primary predictors of self-perceived stigma in PD. Disease characteristics (motor and ADL) did not contribute to stigma perception. Depression is a potential treatment target for self-perceived stigma in PD.Agmt dtd 6-19-2015 - American Parkinson Disease Association, Inc.Accepted manuscrip

Design of the WHIP-PD study: a phase II, twelve-month, dual-site, randomized controlled trial evaluating the effects of a cognitive-behavioral approach for promoting enhanced walking activity using mobile health technology in people with Parkinson-disease

BACKGROUND: Parkinson disease (PD) is a debilitating and chronic neurodegenerative disease resulting in ambulation difficulties. Natural walking activity often declines early in disease progression despite the relative stability of motor impairments. In this study, we propose a paradigm shift with a "connected behavioral approach" that targets real-world walking using cognitive-behavioral training and mobile health (mHealth) technology. METHODS/DESIGN: The Walking and mHealth to Increase Participation in Parkinson Disease (WHIP-PD) study is a twelve-month, dual site, two-arm, randomized controlled trial recruiting 148 participants with early to mid-stage PD. Participants will be randomly assigned to connected behavioral or active control conditions. Both conditions will include a customized program of goal-oriented walking, walking-enhancing strengthening exercises, and eight in-person visits with a physical therapist. Participants in the connected behavioral condition also will (1) receive cognitive-behavioral training to promote self-efficacy for routine walking behavior and (2) use a mHealth software application to manage their program and communicate remotely with their physical therapist. Active control participants will receive no cognitive-behavioral training and manage their program on paper. Evaluations will occur at baseline, three-, six-, and twelve-months and include walking assessments, self-efficacy questionnaires, and seven days of activity monitoring. Primary outcomes will include the change between baseline and twelve months in overall amount of walking activity (mean number of steps per day) and amount of moderate intensity walking activity (mean number of minutes per day in which > 100 steps were accumulated). Secondary outcomes will include change in walking capacity as measured by the six-minute walk test and ten-meter walk test. We also will examine if self-efficacy mediates change in amount of walking activity and if change in amount of walking activity mediates change in walking capacity. DISCUSSION: We expect this study to show the connected behavioral approach will be more effective than the active control condition in increasing the amount and intensity of real-world walking activity and improving walking capacity. Determining effective physical activity interventions for persons with PD is important for preserving mobility and essential for maintaining quality of life. Clinical trials registration NCT03517371, May 7, 2018. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03517371. Date of registration: May 7, 2018. Protocol version: Original.R01 HD092444 - NICHD NIH HHS; 1R01HD092444-01A1 - National Institute of Child Health and Human DevelopmentPublished versio