Measuring Physical Activity in Children Who Do Not Walk and With Cerebral Palsy: An Exploratory Case Series.

AIM: The purpose of this case series was to describe physical activity (PA) amount and intensity in the home and school environment. Accelerometers and heart rate (HR) monitors are reliable and valid measures of PA in children with cerebral palsy (CP) who can walk. There is limited research on PA measures in children with CP who cannot walk. METHODS: Three 9-year-old boys with CP, Gross Motor Function Classification System levels IV and V, participated in a 1-week measurement period wearing waist- and wrist-worn triaxial accelerometers to measure PA counts and a wrist-worn HR monitor to measure PA intensity. PA intensity was calculated using an estimated HR max. Accelerometer counts were reported. Parents and school staff completed activity and eating journals. RESULTS: Six days of PA and HR data were analyzed. Two participants spent more time in moderate/vigorous PA intensity during school compared to at home. Activities with greatest PA intensity included oral eating, communication, and social engagement. Higher activity counts were recorded from the wrist compared with the waist accelerometers. PA and eating journal adherence were high in both settings. CONCLUSION: The findings provide preliminary data to evaluate PA amount and intensity in children with CP who have little walking ability. It is important to consider PA levels in daily activity for youth with CP when designing plans of care.

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.

A Preliminary Study of Voluntary Cough Motor Performance and Learning With Skill Training and Biofeedback.

PURPOSE: Sensorimotor cough skill training (CST) has been shown to improve cough strength, as well as facilitate changes during training (i.e., motor performance) and generalization to untrained tasks (i.e., motor learning). However, there is a gap in our understanding of the effects of voluntary CST (without sensory stimuli) on motor performance and learning. Furthermore, the contribution of physiologic factors, such as lung volume, a driver of cough strength in healthy adults, and treatment-specific factors, such as biofeedback, remains unexamined. METHOD: Twenty individuals with Parkinson's disease (PD) completed pre- and post-CST single voluntary, sequential voluntary, and reflex cough testing. Participants were randomized to biofeedback or no biofeedback groups. They completed one CST session involving 25 trials of voluntary coughs, with the treatment target set 25% above baseline peak flow. Participants were instructed to "cough hard" to exceed the target. In the biofeedback group, participants received direct visualization of the target line in real time. RESULTS: Cough peak flow showed positive improvements in motor performance (ß = .02; 95% credible interval [CI]: 0.01, 0.03) and learning (ß = .26; 95% CI: 0.03, 0.47). Changes in lung volume from pre- to post-CST did not predict treatment response. No differences in treatment response were detected between the biofeedback groups. CONCLUSIONS: A single session of voluntary CST improved voluntary cough motor performance and learning. Although lung volume increased during CST, changes to lung volume did not predict treatment response. These findings demonstrate the potential of voluntary CST to improve motor performance and motor learning among individuals with PD and cough dysfunction. SUPPLEMENTAL MATERIAL AND OPEN SCIENCE FORM: https://doi.org/10.23641/asha.25447444.

Characterizing Heart Rate Variability Response to Maximal Exercise Testing in People with Huntington's Disease.

Background: Huntington's disease (HD) is an autosomal dominant, neurodegenerative disease that involves dysfunction in the autonomic nervous system (ANS). Heart rate variability (HRV) is a valid and noninvasive measure for ANS dysfunction, yet no study has characterized HRV response to exercise in people with HD. Objective: Characterize HRV response to exercise in individuals with HD and explore its implications for exercise prescription and cardiac dysautonomia mechanisms. Methods: 19 participants with HD were recruited as part of a cohort of individuals enrolled in the Physical Activity and Exercise Outcomes in Huntington's Disease (PACE-HD) study at Teachers College, Columbia University (TC). 13 non-HD age- and gender-matched control participants were also recruited from TC. HRV was recorded with a Polar H10 heart rate (HR) monitor before, during, and after a ramp cycle-ergometer exercise test. Results: Participants with HD showed reduced HR peak (p < 0.01) and HR reserve (p < 0.001) compared with controls. Participants with HD demonstrated reduced root mean square of successive differences between normal-to-normal intervals (RMSSD) and successive differences of normal-to-normal intervals (SDSD) at rest (p < 0.001). Participants with HD also showed differences for low frequency (LF) power (p < 0.01), high frequency (HF) normalized units (nu) (p < 0.05), LF (nu) (p < 0.001), and HF/LF ratio (p < 0.05) compared with controls. Conclusions: We found reduced aerobic exercise capacity and sympathovagal dysautonomia both at rest and during post-exercise recovery in people with HD, suggesting modified exercise prescription may be required for people with HD. Further investigations focusing on cardiac dysautonomia and underlying mechanisms of sympathovagal dysautonomia in people with HD are warranted.

An Individualized Yoga Intervention for People with Functional Neurological Disorder: Case Series.

Functional neurological disorder (FND) is a heterogeneous condition of neurological symptoms that cannot be linked to a specific neurological cause. Yoga combines movement, breathing, and meditation and has established mind-body effects for people who are managing both psychological and neurological conditions. This case series describes key components of a yoga program for people with FND, evaluating feasibility, acceptability, and efficacy via self-report surveys, clinical assessments, and postintervention interview. Four individuals with FND participated in 45-minute, one-to-one virtual yoga sessions, two times a week for 8 weeks. We measured outcomes in four domains (healthcare utilization, FND symptoms, quality of life and self-efficacy, and function and mobility) at baseline, week 4, and week 8. Assessments included the Psychogenic Movement Disorders Rating Scale, timed up-and-go test, Patient Health Questionnaire-15, Brief Illness Perceptions Questionnaire, 36-Item Short Form Health Survey, and University of Washington Self-Efficacy Scale. Four participants completed at least 8 sessions, and two completed the full intervention (16 sessions). There were no adverse events. Two participants reported positive changes after yoga and improved on all clinical assessments (timed up-and-go test and Psychogenic Movement Disorders Rating Scale). Postintervention interview analysis revealed three themes: negative diagnosis experience, perceived health effects of yoga, and session format preferences. This was an exploratory case series describing a yoga intervention that was associated with some benefits for people with FND (decreased FND symptom severity and increased function, perceived health, quality of life, and self-efficacy). A larger case series is warranted to understand how to best select individuals who would benefit from the program.

Safety and efficacy of non-invasive brain stimulation for the upper extremities in children with cerebral palsy: A systematic review.

AIM: To evaluate available evidence examining safety and efficacy of non-invasive brain stimulation (NIBS) on upper extremity outcomes in children with cerebral palsy (CP). METHOD: We electronically searched 12 sources up to May 2023 using JBI and Cochrane guidelines. Two reviewers selected articles with predetermined eligibility criteria, conducted data extraction, and assessed risk of bias using the Cochrane Risk of Bias criteria. RESULTS: Nineteen studies were included: eight using repetitive transcranial magnetic stimulation (rTMS) and 11 using transcranial direct current stimulation (tDCS). Moderate certainty evidence supports the safety of rTMS and tDCS for children with CP. Very low to moderate certainty evidence suggests that rTMS and tDCS result in little to no difference in upper extremity outcomes. INTERPRETATION: Evidence indicates that NIBS is a safe and feasible intervention to target upper extremity outcomes in children with CP, although it also indicates little to no significant impact on upper extremity outcomes. These findings are discussed in relation to the heterogeneous participants' characteristics and stimulation parameters. Larger studies of high methodological quality are required to inform future research and protocols for NIBS.

Validity and reliability of inertial measurement units for gait assessment within a post stroke population.

BACKGROUND: The ability to objectively measure spatiotemporal metrics within individuals post-stroke is integral to plan appropriate intervention, track recovery, and ultimately improve efficacy of rehabilitation programs. Inertial measurement units (IMUs) provide a means to systematically collect gait-specific metrics that could not otherwise be obtained from clinical outcomes. However, the use of IMUs to measure spatiotemporal parameters in stroke survivors has yet to be validated. The purpose of this study is to determine the validity and reliability of IMU-recorded spatiotemporal gait metrics as compared to a motion capture camera system (MCCS) in individuals post-stroke. METHODS: Participants (n = 23, M/F = 12/11, mean (SD) age = 50.2(11.1) spatiotemporal data were collected simultaneously from a MCCS and APDM Opal IMUs during a five-minute treadmill walking task at a self-selected speed. Criterion validity and test-retest reliability were assessed using Lin's concordance correlation coefficients (CCCs) and intraclass correlation coefficients (ICCs), respectively. Spatiotemporal values from MCCS and IMU were used to calculate gait asymmetry, and a t-test was used to assess the difference between asymmetry values. RESULTS: There were fair-to-excellent agreement between IMU and MCCS of temporal parameters (CCC 0.56-0.98), excellent agreement of spatial parameters (CCC >0.90), and excellent test-retest reliability for all parameters (ICC >0.90). CONCLUSIONS: Compared to motion capture, the APDM Opal IMUs produced accurate and reliable measures of spatiotemporal parameters. Findings support the use of IMUs to assess spatiotemporal parameters in individual's post-stroke.

Using Smartphone Sensors for Ataxia Trials: Consensus Guidance by the Ataxia Global Initiative Working Group on Digital-Motor Biomarkers.

Smartphone sensors are used increasingly in the assessment of ataxias. To date, there is no specific consensus guidance regarding a priority set of smartphone sensor measurements, or standard assessment criteria that are appropriate for clinical trials. As part of the Ataxia Global Initiative Digital-Motor Biomarkers Working Group (AGI WG4), aimed at evaluating key ataxia clinical domains (gait/posture, upper limb, speech and oculomotor assessments), we provide consensus guidance for use of internal smartphone sensors to assess key domains. Guidance was developed by means of a literature review and a two stage Delphi study conducted by an Expert panel, which surveyed members of AGI WG4, representing clinical, research, industry and patient-led experts, and consensus meetings by the Expert panel to agree on standard criteria and map current literature to these criteria. Seven publications were identified that investigated ataxias using internal smartphone sensors. The Delphi 1 survey ascertained current practice, and systems in use or under development. Wide variations in smartphones sensor use for assessing ataxia were identified. The Delphi 2 survey identified seven measures that were strongly endorsed as priorities in assessing 3/4 domains, namely gait/posture, upper limb, and speech performance. The Expert panel recommended 15 standard criteria to be fulfilled in studies. Evaluation of current literature revealed that none of the studies met all criteria, with most being early-phase validation studies. Our guidance highlights the importance of consensus, identifies priority measures and standard criteria, and will encourage further research into the use of internal smartphone sensors to measure ataxia digital-motor biomarkers.

Wearable activity monitors to support physical activity interventions in neurodegenerative disease: a feasibility study.

Aim: To evaluate the feasibility of using activity monitors in a physical activity (PA) intervention in people with Parkinson's (PD) and Huntington's disease (HD). Materials & methods: People with early-stage PD (n = 13) and HD (n = 14) enrolled in a 4-month coaching program, wore a Fitbit, and were guided through a behavioral intervention to facilitate PA uptake. Wear time, wear habits and activity metrics (e.g., steps) were analyzed. Results: Retention rate was 85% and participants had an average 92.3% (±9.2) valid wear days. Daily wear time was 18.4 (±4.5) h. Day & night Fitbit wearers showed improvements in steps (d = 1.02) and MET×min/week (d = 0.69) compared with day-only wearers. Conclusion: Implementing wearables in a coaching intervention was feasible and provided insights into PA behavior.

Physical Activity and Fitness Levels of Individuals With Ataxia: A Cross-Sectional Study.

OBJECTIVE: To investigate physical activity levels of individuals with ataxia and correlate fitness to ataxia severity. DESIGN: An observational study SETTING: An outpatient ataxia clinic in a large, tertiary, urban hospital in the US. PARTICIPANTS: Individuals with cerebellar ataxia (N=42). INTERVENTION: Not applicable. MAIN OUTCOME MEASURE: Participants were classified as sedentary or physically active using the International Physical Activity Questionnaire-Short Form (IPAQ-SF). Maximal oxygen consumption (V̇o2max) as an indicator of fitness level was measured, and ataxia severity was determined by the Scale for the Assessment and Rating of Ataxia (SARA). Mixed effect models were used to correlate ataxia severity to fitness levels. RESULTS: Most participants (28 out of 42) lived sedentary lifestyles, and these individuals had poor fitness levels (only 67.3% of their predicted measure). The main barriers to physical activity included lack of energy, lack of time, and fear of falling. There were no differences in age, sex, disease type, disease duration, ataxia severity, fatigue level, and medication use between sedentary and active groups. Measures of V̇o2max, maximal work, maximal heart rate, and anerobic threshold demonstrated statistically significant differences between groups whereas maximal respiratory rate and expired ventilation/carbon dioxide production were similar between groups. When adjusting for age, sex, functional mobility status, and disease duration, ataxia severity was inversely correlated with fitness level in the sedentary group. There was no relationship between ataxia severity and fitness level in the 14 individuals who were physically active. CONCLUSIONS: Lower fitness levels were associated with more ataxia symptoms in the sedentary group. This relationship was not seen in individuals who were more active. Given the poor health outcomes associated with low fitness, physical activity should be encouraged in this population.

Dance interventions for individuals post-stroke - a scoping review.

BACKGROUND: There is a growing body of literature assessing the potential benefits of dance for individuals post-stroke. OBJECTIVES: We conducted a scoping review mapping the state of the literature on feasibility, intervention procedures, and efficacy of dance to improve health-related outcomes for individuals post-stroke. ELIGIBILITY CRITERIA: Included studies were original research that described the use of a dance intervention for individuals post-stroke, included any health-related outcome, and were written in English. SOURCES OF EVIDENCE: Databases selected were Pubmed, Scopus, Google Scholar, Proquest, MedRxiv, and CINHAL. CHARTING METHODS: Two reviewers extracted relevant data and results were organized into themes and categories determined by all authors through discussion. RESULTS: We searched electronic databases were in February 2021. We included 18 publications from 14 studies. Ten were quantitative, five were qualitative, one was mixed-methods, and two were community project descriptions. Twelve publications evaluated in-person dance classes and six evaluated dance exergaming. Based on the limited studies included, evidence suggests dance is a feasible and potentially effective intervention for individuals post-stroke. Studies demonstrate dance may facilitate changes in balance and fall risk, encourage confidence, promote comfort with the changed body, increase rehabilitation motivation, and facilitate community reintegration. Evidence is limited by number of studies, design (lack of control groups and blinded assessments), intervention descriptions, and outcomes reporting. CONCLUSIONS: There is growing interest in dance for stroke interventions. Further research should focus on rigorous study design, optimal intervention timing, consistency of reporting outcomes, key elements of dance classes, and the impact of cultural dance styles.

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.

Coordination of Care Among Physical Therapists and Neurologists in Huntington Disease.

This study presents a framework for physical therapy through the course of Huntington disease (HD) which includes coordinated care plans with neurologists. HD is an inherited neurodegenerative disorder that leads to impaired strength and coordination and ultimately progressive loss of function. Interdisciplinary HD care teams provide patient-centered, comprehensive evaluations and make recommendations for pharmacologic, healthcare, and lifestyle interventions based on best available evidence. Physical therapists work to improve movement and mobility using specific therapeutic interventions and individualized exercise programs. The proposed framework recommends that neurologists refer persons with HD to physical therapy at all disease stages, ideally beginning in premanifest and early stages, and that they regularly communicate with physical therapists to ensure implementation of a coordinated care plan. Resources are provided for neurologists to facilitate appropriate referral for individuals with HD to physical therapy based on clinical practice guidelines, including a referral decision guide.

Clinical Decision Trees to Guide Physical Therapy Management of Persons with Huntington's Disease.

BACKGROUND: In 2020, our group published physical therapy clinical practice guidelines (CPG) for people with Huntington's disease (HD). The guideline recommendations were categorized according to six primary movement impairment classifications. OBJECTIVE: To facilitate implementation of this CPG, we have developed guideline-based algorithms for physical therapy assessments and interventions and recommendations for therapists to overcome barriers to CPG implementation for people with HD. METHODS: We conducted a literature review of papers that evaluated physical therapy interventions in individuals with HD (n = 26) to identify assessments for each of the primary movement impairment classifications, and then searched for papers (n = 28) that reported their clinometric/psychometric properties in HD. Assessments were evaluated using modified Movement Disorder Society Committee on Rating Scales criteria and other relevant criteria. RESULTS: We identified a "core set" of physical therapy assessments for persons with HD, including the Six Minute Walk Test, Timed Up and Go Test, Berg Balance Scale, and the Medical Outcomes Study Short Form 36 (SF-36). We then developed guideline-based decision trees to assist in decision making and implementation of the CPG into practice for persons with HD across the continuum of care. Finally, we developed strategies for overcoming barriers to implementation, such as seeking specialized training in HD, engaging caretakers or family members to help the person with HD to exercise, and establishing clinical pathways that support early physical therapy referrals. CONCLUSION: Knowledge translation documents such as this are essential to promoting implementation of the physical therapy CPGs into clinical practice.

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).

Physical activity and exercise outcomes in Huntington's disease (PACE-HD): results of a 12-month trial-within-cohort feasibility study of a physical activity intervention in people with Huntington's disease.

INTRODUCTION: While physical activity (PA) is recognized as important in Huntington's disease (HD) disease management, there has been no long-term evaluation undertaken. We aimed to evaluate the feasibility of a nested (within cohort) randomized controlled trial (RCT) of a physical therapist-led PA intervention. METHODS: Participants were recruited from six HD specialist centers participating in the Enroll-HD cohort study in Germany, Spain and U.S. Assessments were completed at baseline and 12 months and linked to Enroll-HD cohort data. Participants at three sites (cohort) received no contact between baseline and 12 month assessments. Participants at three additional sites (RCT) were randomized to PA intervention or control group. The intervention consisted of 18 sessions delivered over 12 months; control group participants received no intervention, however both groups completed monthly exercise/falls diaries and 6-month assessments. RESULTS: 274 participants were screened, 204 met inclusion criteria and 116 were enrolled (59 in cohort; 57 in RCT). Retention rates at 12-months were 84.7% (cohort) and 79.0% (RCT). Data completeness at baseline ranged from 42.3 to 100% and at 12-months 19.2-85.2%. In the RCT, there was 80.5% adherence, high intervention fidelity, and similar adverse events between groups. There were differences in fitness, walking endurance and self-reported PA at 12 months favoring the intervention group, with data completeness >60%. Participants in the cohort had motor and functional decline at rates comparable to previous studies. CONCLUSION: Predefined progression criteria indicating feasibility were met. PACE-HD lays the groundwork for a future, fully-powered within cohort trial, but approaches to ensure data completeness must be considered. CLINICALTRIALS: GOV: NCT03344601.