Video research visits for atypical parkinsonian syndromes among Fox Trial Finder participants

Abstract

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.

Remote Administration of the MDS-UPDRS in the Time of COVID-19 and Beyond

“…Participant factors (age, access/familiarity with technology, disease stage, cognitive status) can present additional challenges. In our experience, remote visits can be successfully conducted among older individuals and those with substantial disability [15] and may be even more valuable among this group given their travel-related challenges and higher risk for worse outcomes with COVID-19 [16]. To improve participant comfort and the likelihood of success, adequate preparation is critical.…”

Design of a virtual longitudinal observational study in Parkinson’s disease (AT‐HOME PD)

“…Similar outcome assessments are included in subsequent annual visits along with the addition of the clinician and patient global impression of change 29 . After each video visit, participants are surveyed on their experience (technical quality, comfort, and convenience) with the video visits based on surveys developed from previous studies 32,33 . Data from each video visit are entered directly into REDCap.…”

Practicing in a Pandemic

“…Vital signs may be useful in some patients, and many have digital thermometers and portable blood pressure cuffs; assessment of orthostatic vital signs is feasible with instruction. 11 Among those without this equipment, the neurologist or onsite helpers can assess respiratory rate, and savvy patients or family members could be instructed to take a radial pulse. The clinician can also demonstrate provocative orthopedic maneuvers (e.g.…”

“…Reassuringly, assessment of remote encounters across multiple neurological conditions demonstrates that patients and neurologists establish similar comfort as compared to routine in-person visits. 11,28,29 Again, older patients with neurological disease or those with advanced disability may feel less comfortable with the use of technology. While prior studies have demonstrated the feasibility of remote visits among those with advanced neurodegenerative conditions, patients or families with greater baseline comfort with visits may self-select for participation in these studies, limiting generalizability.…”