The COVID-19 pandemic forced the abrupt and rapid expansion of an alternative care model that embraces the use of video-based visits in the care of persons with Parkinson’s disease. Video-based visits not only eliminate the risk of infection but also reduce geography- and disability-related barriers to accessing specialist care. Research has established that they are feasible, acceptable to persons with Parkinson’s disease and patient-centered. In the Unites States, the relaxation of licensure requirements, adoption of reimbursement parity and investment in telemedicine infrastructure has enabled the rapid growth of video-based visits during the COVID-19 pandemic. Now, we must turn our attention to ensuring that progress made in expanding access to video-based care is not lost and expanded worldwide. More work is needed to identify the optimal video-based care model, establish best practices, and ensure equitable access to care.
Background: Older patients with Huntington's disease (HD) are often thought to have a slower progressing disease course with less behavioral symptoms than younger patients. However, phenotypic differences based on age of onset have not been well characterized in a large HD population. This study will determine the difference in manifestations and disease progression between patients with young, typical, and late onset adult HD at different stages of disease. Methods: Data obtained from Enroll-HD. Adults with manifest HD were included. Age groups were defined as young onset (YO: 20-29 years), typical onset (TO: 30-59 years), and late onset (LO: 60+ years). Subjects were categorized by TFC score, from Stage I (least severe) to Stage V (most severe). Motor, cognitive, and behavioral symptoms were analyzed. Descriptive statistics and Bonferroni p-value correction for pairwise comparison were calculated. Results: 7,311 manifest HD participants were included (612 YO, 5,776 TO, and 923 LO). The average decline in TFC score from baseline to second visit (1.5-2.5 years) was significantly faster for YO (-1.75 points) compared to TO (-1.23 points, p = 0.0105) or LO (-0.97 points, p = 0.0017). Motor deficits were worse for LO participants at early stages of HD, and worse for YO participants at advanced stages. YO and TO participants had greater burden of behavioral symptoms at early stages of disease compared to LO. Discussion: YO is predictive of a faster functional decline for adults with HD when compared to those with TO and LO. Motor and behavioral manifestations differ based on age of onset. Highlights: This study compares HD manifestations while controlling for disease severity, detailing robust phenotypic differences by age of onset alone. These findings have implications for the clinical management of HD symptoms and have the possibility to improve prognostic and treatment precision.
Purpose: To compare demographics, self-reported symptom burden, Health-Related Quality of Life (HRQL), and Self-Efficacy for Exercise (SEE) between participants and non-participants of Rock Steady Boxing (RSB), a non-contact boxing program for individuals with Parkinson's disease (PD) that focuses on agility, balance, and speed training. Materials and methods: Adults with PD who had heard of RSB completed a 20 min, 61-question electronic survey including the Parkinson's Disease Questionnaire-39 (PDQ-39) and the Self-Efficacy for Exercise (SEE) scale. Differences between participants and never-participants were analyzed using chisquared test, fisher's exact test and Wilcoxon test. Results: Of 2054 individuals enrolled in the survey, 1709 were eligible for analysis. 1333 were current participants, 166 previous-participants, and 210 never-participants. RSB participants were median age 69, 59% male, and 97% Caucasian. The majority of current participants reported that RSB improved their social life (70%), fatigue (63%), fear of falling (62%), depression (60%), and anxiety (59%). Compared to previous and never-participants, current participants had better median PDQ-39 scores (36 and 32 vs 25, p < 0.01) and SEE scores (43 and 48 vs 54, p < 0.01). Conclusions: This is the largest survey of RSB use in PD. RSB participants report improvement in nonmotor impairments and have significantly better HRQL and ESE compared to never-participants. ä IMPLICATIONS FOR REHABILITATIONParkinson's disease (PD) is a slowly progressive neurodegenerative condition that affects motor function and subsequently, quality of life. Exercise is increasingly recognized as an important treatment for motor and non-motor symptoms of PD. Rock Steady Boxing (RSB) is a specific non-contact boxing program for PD that is growing and increasing in popularity, though there is limited data on its effect on PD symptoms and quality of life.
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