Identifying Barriers and Facilitators to Accessing Care for Historically Marginalized Communities Affected by Parkinson Disease: A Qualitative Study.

INTRODUCTION: Parkinson disease (PD) is the second most common neurodegenerative disease. Members of the Black Diaspora (MBD) and Hispanic/Latinx people are less likely to receive a timely diagnosis following the onset of symptoms and more likely to experience greater disease severity due to late diagnosis. Historically marginalized populations (i.e., MBD, Hispanic, and Latinx communities) are not accurately represented in research; this, along with many other barriers, compounds underreporting and lack of recognition of PD. It is important to understand barriers to early diagnosis and healthcare access for these historically marginalized populations from the community's perspective. METHODS: Our team conducted two focus groups to identify barriers and facilitators to PD healthcare-seeking behavior. We sought to identify which barriers are modifiable to ultimately improve engagement in neurological care for MBD and Hispanic individuals affected by PD. RESULTS: We enrolled 15 participants (13 female; African/African American/Black n = 10, Hispanic/Puerto Rican n = 3, other n = 2) for two focus groups. Discussions revealed sources of barriers to healthcare-seeking behavior in three main domains: legacy of racism in the United States, ancestral cultural environment, and healthcare system access. These sources influenced individuals' PD knowledge and familiarity. Additionally, participants expressed a desire to know more about PD and called for increased community-based programming for education and awareness. DISCUSSION: This paper uses a community-based participatory research approach to describe the experiences of MBD, Hispanic, and Latinx people in Manhattan and the surrounding areas in relation to possible sources of healthcare disparities and delayed PD diagnosis. These sources have broad implications and should be addressed through collaborative community programming.

Development of a Physical Therapy Telehealth Examination Battery for People with Parkinson Disease.

Scope: The rapid transition to telehealth following the COVID-19 pandemic raised challenges for remote delivery of physical therapy. One challenge was identifying outcome measures for people with Parkinson Disease (PwP) that could safely be conducted via telehealth. This paper evaluates the feasibility of a telehealth physical therapy examination battery for PwP in early to middle stage of disease progression. Methodology: We reviewed recommended outcome measures from the American Physical Therapy Association's Academy of Neurologic Physical Therapy (ANPT) Parkinson Evidence Database to Guide Effectiveness (EDGE) document and evaluated their appropriateness for remote administration. A clinical decision tree was created to streamline the examination process, incorporating elements of the ANPT movement analysis of tasks as a movement screen. The examination battery was then conducted on three PwP and evaluated for safety and feasibility. Conclusion: This physical therapy telehealth examination battery provides physical therapists with a method to conduct safe and efficient remote assessments for PwP.

Physical Activity Coaching via Telehealth for People With Parkinson Disease: A Cohort Study.

BACKGROUND AND PURPOSE: Physical activity (PA) has many known benefits for people with Parkinson disease (PD); however, many people do not meet recommended levels of frequency or intensity. We designed Engage-PD, a PA coaching program delivered via telehealth and grounded in self-determination theory to promote PA uptake and facilitate exercise self-efficacy in people with Parkinson disease. This study aimed to determine the feasibility and preliminary efficacy of Engage-PD, and to explore whether baseline characteristics were associated with outcomes. METHODS: A single cohort of people with PD (n = 62, Hoehn and Yahr I-III) participated in the 3-month Engage-PD program, which consisted of up to 5 telehealth coaching sessions delivered by physical therapists. Feasibility was evaluated based on recruitment and retention rates, along with participants' feedback. Planned and unplanned PA, exercise self-efficacy (ESE), and individualized goals were assessed pre- and post-intervention. Relationships between baseline characteristics and changes in planned PA and ESE were also evaluated. RESULTS: Recruitment (62%) and retention (85%) rates were high, and the intervention was well accepted and perceived by the participants. From pre- to postintervention, participants increased planned PA (d = 0.33), ESE (d = 1.20), and individualized goal performance (d = 1.63) and satisfaction (d = 1.70). Participants with lower baseline planned PA experienced greater improvements in planned PA, and those with lower baseline ESE experienced greater improvements in ESE. DISCUSSION AND CONCLUSIONS: A telehealth PA coaching program for people with PD was feasible and potentially efficacious. Physical therapist-led coaching may be an important component of a consultative model of care starting early in the disease process.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, available at: http://links.lww.com/JNPT/A393).

Nusinersen Treatment in Adults With Spinal Muscular Atrophy.

OBJECTIVE: To determine changes in motor and respiratory function after treatment with nusinersen in adults with spinal muscular atrophy (SMA) during the first two years of commercial availability in the USA. METHODS: Data were collected prospectively on adult (age >17 years at treatment initiation) SMA participants in the Pediatric Neuromuscular Clinical Research (PNCR) Network. Baseline assessments of SMA outcomes including the Expanded Hammersmith Functional Rating Scale (HFMSE), Revised Upper Limb Module (RULM), and 6-Minute Walk Test (6MWT) occurred <5 months before treatment, and post-treatment assessments were made up to 24 months after nusinersen initation. Patient-reported experiences, safety laboratory tests and adverse events were monitored. The mean annual rate of change over time was determined for outcome measures using linear mixed effects models. RESULTS: Forty-two adult SMA participants (mean age: 34 years, range 17-66) receiving nusinersen for a mean of 12.5 months (range 3-24 months) were assessed. Several motor and respiratory measures showed improvement distinct from the progressive decline typically seen in untreated adults. Participants also reported qualitative improvements including muscle strength, stamina, breathing and bulbar related outcomes. All participants tolerated nusinersen with normal surveillance labs and no significant adverse events. CONCLUSIONS: Trends of improvement emerged in functional motor, patient-reported, and respiratory measures, suggesting nusinersen may be efficacious in adults with SMA. Larger well-controlled studies and additional outcome measures are needed to firmly establish the efficacy of nusinersen in adults with SMA. CLASSIFICATION OF EVIDENCE: This study provides Class IV evidence regarding nusinersen tolerability and efficacy based on reported side effects and pulmonary and physical therapy assessments in an adult SMA cohort.

Accuracy of Activity Trackers in Parkinson Disease: Should We Prescribe Them?

Background: Wearable, consumer-grade activity trackers have become widely available as a means of monitoring physical activity in the form of step counts. However, step counts may not be accurate in persons with Parkinson disease (PD) due to atypical gait characteristics. Objective: This study aimed to investigate the accuracy of 4 consumer-grade activity trackers in individuals with PD while ambulating during continuous and discontinuous walking tasks. Design: This study used a cross-sectional design. Methods: Thirty-three persons with PD (Hoehn & Yahr stages 1-3) donned 4 models of activity trackers on the less affected side of their bodies. Participants performed 2 continuous walking tasks (2-minute walk tests at comfortable and fast speeds) and 2 discontinuous walking tasks (a simulated household course and an obstacle negotiation course) in an outpatient setting. Bland-Altman plots and intraclass correlation coefficients [ICC(2,1)] were computed as a measure of agreement between actual steps taken (reference standard: video recording) and steps recorded by each tracker. Results: The accuracy of the activity trackers varied widely, with ICCs ranging from -0.03 to 0.98. Overall, the most accurate device across all tasks was the Fitbit Zip, and the least accurate was the Jawbone Up Move during the simulated household course. All activity trackers were more accurate for continuous walking tasks compared with discontinuous walking tasks. Waist-mounted devices were more accurate than wrist-mounted devices with continuous tasks. Bland-Altman plots revealed that all activity trackers underestimated step counts. Limitations: All walking tasks were measured over relatively short distances. Conclusions: In persons with mild-to-moderate PD, waist-worn activity trackers may be prescribed to monitor bouts of continuous walking with reasonable accuracy; however, activity trackers have little utility in monitoring discontinuous walking common in household settings.

Pulmonary Physical Therapy Techniques to Enhance Survival in Amyotrophic Lateral Sclerosis: A Systematic Review.

BACKGROUND AND PURPOSE: Respiratory insufficiency is the primary cause of morbidity and mortality in individuals with amyotrophic lateral sclerosis (ALS). Although mechanical interventions are effective in prolonging survival through respiratory support, pulmonary physical therapy interventions are being investigated. The purpose of this systematic review was to examine the effectiveness of pulmonary physical therapy interventions across the progressive stages of ALS. METHODS: Six databases were searched for articles from inception to December 2014 investigating pulmonary physical therapy interventions in the ALS population. The search strategy followed Cochrane Collaboration guidelines with replication per database. Effect sizes (ES) were calculated for primary outcome measures: forced vital capacity (FVC) and peak cough expiratory flow (PCEF). RESULTS: Seven studies met inclusion criteria. Four studies used control groups whereas the remainder used repeated measures. With the exception of diaphragmatic breathing, pulmonary physical therapy interventions were effective in improving multiple respiratory outcome measures in this population. Inspiratory muscle training (IMT) was shown to prolong respiratory muscle strength with a strong effect size (ES = 1.48) for FVC. In addition, mean length of survival increased by 12 months. Lung volume recruitment training (LVRT) strongly enhanced immediate cough efficacy with improved FVC (ES = 1.02) and PCEF (ES = 1.82). Manually assisted cough (MAC) only improved PCEF by a small amount (ES = 0.15, bulbar ALS; ES = 0.16, classical ALS groups). DISCUSSION AND CONCLUSIONS: Specific pulmonary physical therapy interventions (IMT, LVRT, and MAC) have effectiveness in improving respiratory outcome measures and increasing survival. These should be routinely incorporated into the comprehensive management of individuals with ALS. More rigorous methodological investigations should be performed to replicate these findings.Video abstract available with brief technique demonstration of IMT and LVRT (see Supplemental Digital Content 1, http://links.lww.com/JNPT/A136).