We conducted a pilot study using a passive radio-wave-based home monitor in individuals with Parkinson disease (PD) with a focus on gait, home activity, and time in bed. We enrolled 7 ambulatory individuals to have the device installed in the bedroom of their homes over 8 weeks and performed standard PD assessments at baseline. We evaluated the ability of the device to objectively measure gait and time in bed and to generate novel visualizations of home activity. We captured 353 days of monitoring. Mean gait speed (0.39–0.78 m/s), time in bed per day (4.4–12.1 h), and number (1.4–5.9) and duration (15.0–49.8 min) of nightly awakenings varied substantially across and within individuals. Derived gait speed correlated well with the Movement Disorder Society-Unified Parkinson’s Disease Rating Scale total (r = –0.88, p = 0.009) and motor sub-score (r = –0.95, p = 0.001). Six of the seven participants agreed that their activity was typical and indicated a willingness to continue monitoring. This technology provided promising new insights into the home activities of those with PD and may be broadly applicable to other chronic conditions.
BackgroundUse of video research visits in neurologic conditions is rising, but their utility has not been assessed in atypical parkinsonian syndromes. We sought to evaluate the diagnostic concordance between video-based vs self-reported diagnoses of multiple system atrophy, progressive supranuclear palsy, dementia with Lewy bodies, and corticobasal syndrome. We also assessed patient satisfaction with video-based visits.MethodsWe conducted a study of video-based research visits in individuals with an atypical parkinsonian syndrome enrolled in The Michael J. Fox Foundation's Fox Trial Finder. Participants completed a recorded real-time video visit with a remote evaluator who was blinded to the participant's self-reported diagnosis. The investigator conducted a structured interview and performed standard assessments of motor function. Following the visit, the investigator selected the most likely diagnosis. The recorded visit was reviewed by a second blinded investigator who also selected the most likely diagnosis. We evaluated diagnostic concordance between the 2 independent investigators and assessed concordance between investigator consensus diagnosis and self-reported diagnosis using Cohen's kappa. We assessed participant satisfaction with a survey.ResultsWe enrolled 45 individuals with atypical parkinsonian syndromes, and 44 completed the investigator-performed video assessment. We demonstrated excellent concordance in diagnosis between the investigators (κ = 0.83) and good reliability of self-reported diagnosis (κ = 0.73). More than 90% of participants were satisfied or very satisfied with the convenience, comfort, and overall visit.ConclusionsVideo research visits are feasible and reliable in those with an atypical parkinsonian syndrome. These visits represent a promising option for reducing burden and extending the reach of clinical research to individuals with these rare and disabling conditions.
The greatest perceived barrier among respondents was distance from patient to specialist, and 40% of local clinicians would recommend video visits. As telemedicine grows, improved communication between remote specialists and local clinicians is likely needed.
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