Impact of motor fluctuations on real-life gait in Parkinson’s patients

Background people with PD (PWP) have an increased risk of becoming inactive. Wearable sensors can provide insights into daily physical activity and walking patterns. Research questions (1) is the severity of motor fluctuations associated with sensor-derived average daily walking quantity? (2) is the severity of motor fluctuations associated with the amount of change in sensor-derived walking quantity after levodopa intake? Methods 304 Dutch PWP from the Parkinson@Home study were included. At baseline, all participants received a clinical examination. During the follow-up period (median: 97 days; 25-Interquartile range-IQR: 91 days, 75-IQR: 188 days), participants used the Fox Wearable Companion app and streamed smartwatch accelerometer data to a cloud platform. The first research question was assessed by linear regression on the sensor-derived mean time spent walking/day with the severity of fluctuations (MDS-UPDRS item 4.4) as independent variable, controlled for age and MDS-UPDRS part-III score. The second research question was assessed by linear regression on the sensor-derived mean post-levodopa walking quantity, with the sensor-derived mean pre-levodopa walking quantity and severity of fluctuations as independent variables, controlled for mean time spent walking per day, age and MDS-UPDRS part-III score. Results PWP spent most time walking between 8am and 1pm, summing up to 72 ± 39 (mean ± standard deviation) minutes of walking/day. The severity of motor fluctuations did not influence the mean time spent walking (B = 2.4 ± 1.9, p = 0.20), but higher age (B = −1.3 ± 0.3, p = < 0.001) and greater severity of motor symptoms (B = −0.6 ± 0.2, p < 0.001) was associated with less time spent walking (F(3,216) = 14.6, p<.001, R2 =.17). The severity of fluctuations was not associated with the amount of change in time spent walking in relation to levodopa intake in any part of the day. Significance Analysis of sensor-derived gait quantity suggests that the severity of motor fluctuations is not associated with changes in real-life walking patterns in mildly to moderate affected PWP

Feasibility of large-scale deployment of multiple wearable sensors in Parkinson’s disease

Wearable devices can capture objective day-to-day data about Parkinson’s Disease (PD). This study aims to assess the feasibility of implementing wearable technology to collect data from multiple sensors during the daily lives of PD patients. The Parkinson@home study is an observational, two-cohort (North America, NAM; The Netherlands, NL) study. To recruit participants, different strategies were used between sites. Main enrolment criteria were self-reported diagnosis of PD, possession of a smartphone and age ≥18 years. Participants used the Fox Wearable Companion app on a smartwatch and smartphone for a minimum of 6 weeks (NAM) or 13 weeks (NL). Sensor-derived measures estimated information about movement. Additionally, medication intake and symptoms were collected via self-reports in the app. A total of 953 participants were included (NL: 304, NAM: 649). Enrolment rate was 88% in the NL (n = 304) and 51% (n = 649) in NAM. Overall, 84% (n = 805) of participants contributed sensor data. Participants were compliant for 68% (16.3 hours/participant/day) of the study period in NL and for 62% (14.8 hours/participant/day) in NAM. Daily accelerometer data collection decreased 23% in the NL after 13 weeks, and 27% in NAM after 6 weeks. Data contribution was not affected by demographics, clinical characteristics or attitude towards technology, but was by the platform usability score in the NL (χ2 (2) = 32.014, p<0.001), and self-reported depression in NAM (χ2(2) = 6.397, p = .04). The Parkinson@home study shows that it is feasible to collect objective data using multiple wearable sensors in PD during daily life in a large cohort

The Experience of OFF Periods in Parkinson’s Disease: Descriptions, Triggers, and Alleviating Factors

Purpose: Wearing off of Parkinson’s disease medication is common, but triggers and coping strategies for this transient phenomenon are poorly understood. We aimed to assess the lived experience of OFF periods for people with Parkinson’s disease. Methods: Participants in the longitudinal Fox Insight study who endorsed OFF periods were invited to complete a survey consisting of both multiple-choice and free-text responses. Descriptive statistics were used to summarize multiple-choice responses, and free-text responses were classified into themes through iterative discussion by 3 movement disorders specialists. Results: A total of 2110 participants (52.4% male) completed the survey. Tremor was the most common description of OFF periods (n = 1038, 49.2%), followed by gait changes (n = 535, 25.4%) and rigidity (n = 430, 20.4%). Of 1498 specific triggers for OFF symptoms, the most common was stress (n = 920, 61.4%), followed by anxiety/depression (n = 476, 31.8%) and tiredness/fatigue (n = 351, 23.4%). Common coping strategies (n = 1416 responses) included exercise (n = 678, 47.9%), taking a break (n = 504, 35.6%), and meditation (n = 276, 19.5%). Conclusions: Although OFF periods are common, the individual experiences of OFF vary. This knowledge could be used to develop new counseling strategies for OFF periods in people with Parkinson’s disease

Triggers and alleviating factors for fatigue in Parkinson's disease.

BackgroundFatigue is common in Parkinson's Disease, but few effective treatments are available for it. Exploring triggers and alleviating factors, including effects of exercise, could inform development of management strategies for Parkinson's Disease fatigue.ObjectivesTo examine triggers and alleviating factors for fatigue reported by individuals with Parkinson's Disease, including perceived effect of exercise.MethodsA sample of individuals with self-reported Parkinson's Disease participating in the study Fox Insight were administered an online survey. The survey included the Parkinson's Fatigue Scale, the Physical Activity Scale for the Elderly, and multiple-choice questions about triggers and alleviating factors for fatigue.ResultsAmong the sample of 1,029 individuals with Parkinson's disease, mean (standard deviation (SD)) age was 67.4 (9.3) years, 44.0% were female. Parkinson's Fatigue Scale score ranged from 16-80, mean (SD) 48.8 (16.2). Poor sleep (62.1%) and physical exertion (45.1%) were frequently reported triggers for fatigue. Coping strategies including sitting quietly (58.1%), laying down with or without napping, and exercise (20%). Physical Activity Scale for the Elderly scores were higher in those who reported that exercise alleviated their fatigue (49.7%) compared to those who reported it worsened their fatigue (18.9%) (mean (SD) score 158.5 (88.8) vs 119.8 (66.6) respectively; pConclusionsSeveral behavioral and environmental triggers and alleviating strategies for fatigue are reported by individuals with Parkinson's disease. Many feel that exercise alleviates fatigue, though the relationship between exercise and fatigue in Parkinson's Disease appears complex. This exploratory study may inform future development of treatments or coping strategies for Parkinson's disease fatigue

The experience of care partners of patients with Parkinson's disease psychosis.

BackgroundParkinson's disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP.ObjectiveTo understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis.MethodsThis was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed.ResultsNine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers.ConclusionsThis qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners

Recruitment for Remote Decentralized Studies in Parkinson’s Disease

BackgroundTraditional in-person Parkinson's disease (PD) research studies are often slow to recruit and place unnecessary burden on participants. The ongoing COVID-19 pandemic has added new impetus to the development of new research models.ObjectiveTo compare recruitment processes and outcomes of three remote decentralized observational PD studies with video visits.MethodsWe examined the number of participants recruited, speed of recruitment, geographic distribution of participants, and strategies used to enhance recruitment in FIVE, a cross-sectional study of Fox Insight participants with and without PD (n = 203); VALOR-PD, a longitudinal study of 23andMe, Inc. research participants carrying the LRRK2 G2019S variant with and without PD (n = 277); and AT-HOME PD, a longitudinal study of former phase III clinical trial participants with PD (n = 226).ResultsAcross the three studies, 706 participants from 45 U.S. states and Canada enrolled at a mean per study rate of 4.9 participants per week over an average of 51 weeks. The cohorts were demographically homogenous with regard to race (over 95%white) and level of education (over 90%with more than a high school education). The number of participants living in primary care Health Professional Shortage Areas in each study ranged from 30.3-42.9%. Participants reported interest in future observational (98.5-99.6%) and interventional (76.1-87.6%) research studies with remote video visits.ConclusionRecruitment of large, geographically dispersed remote cohorts from a single location is feasible. Interest in participation in future remote decentralized PD studies is high. More work is needed to identify best practices for recruitment, particularly of diverse participants

Video-based Parkinson’s disease assessments in a nationwide cohort of Fox Insight participants

Introduction: Parkinson’s disease (PD) research is hampered by slow, inefficient recruitment and burdensome in-person assessments that may be challenging to conduct in a world affected by COVID-19. Fox Insight is an ongoing prospective clinical research study that enables individuals to participate in clinical research from their own homes by completing online questionnaires. To date, over 45,000 participants with and without PD have enrolled. We sought to validate self-reported PD diagnosis in the Fox Insight cohort, assess the validity of other self-reported health information, and evaluate the willingness of participants to participate in video-based research studies. Methods: Individuals with and without self-reported PD enrolled in Fox Insight were invited to participate in this virtual research study. Participants completed online questionnaires and two virtual visits, during which we conducted standard cognitive and motor assessments. A movement disorder expert determined the most likely diagnosis, which was compared to self-reported diagnosis. Results: A total of 203 participants from 40 U.S. states, 159 with remote clinician-determined PD and 44 without, completed the study (59% male, mean (SD) age 65.7 (9.8)). Level of agreement between self-reported PD diagnosis in Fox Insight and clinician-determined diagnosis was very good ((kappa = 0.85, 95% CI 0.76–0.94). Overall, 97.9% of participants were satisfied with the study, 98.5% were willing to participate in a future observational study with virtual visits, and 76.1% were willing to participate in an interventional trial with virtual visits. Conclusion: Among the Fox Insight cohort, self-reported diagnosis is accurate and interest in virtual research studies is high

Video-based Parkinson's disease assessments in a nationwide cohort of Fox Insight participants.

IntroductionParkinson's disease (PD) research is hampered by slow, inefficient recruitment and burdensome in-person assessments that may be challenging to conduct in a world affected by COVID-19. Fox Insight is an ongoing prospective clinical research study that enables individuals to participate in clinical research from their own homes by completing online questionnaires. To date, over 45,000 participants with and without PD have enrolled. We sought to validate self-reported PD diagnosis in the Fox Insight cohort, assess the validity of other self-reported health information, and evaluate the willingness of participants to participate in video-based research studies.MethodsIndividuals with and without self-reported PD enrolled in Fox Insight were invited to participate in this virtual research study. Participants completed online questionnaires and two virtual visits, during which we conducted standard cognitive and motor assessments. A movement disorder expert determined the most likely diagnosis, which was compared to self-reported diagnosis.ResultsA total of 203 participants from 40 U.S. states, 159 with remote clinician-determined PD and 44 without, completed the study (59% male, mean (SD) age 65.7 (9.8)). Level of agreement between self-reported PD diagnosis in Fox Insight and clinician-determined diagnosis was very good ((kappa&nbsp;=&nbsp;0.85, 95% CI 0.76-0.94). Overall, 97.9% of participants were satisfied with the study, 98.5% were willing to participate in a future observational study with virtual visits, and 76.1% were willing to participate in an interventional trial with virtual visits.ConclusionAmong the Fox Insight cohort, self-reported diagnosis is accurate and interest in virtual research studies is high