Objective: To retain a well-characterized longitudinal Parkinson’s Study, The Portland Oregon Pacific UDALL Center (PRE-PUC) cohort, during the pandemic years.

Background: Although best known for its characteristic movement disorder, Parkinson’s disease (PD) is now appreciated to cause cognitive, psychiatric, autonomic, and sensory disturbances.  In 2010, the multi-site PUC was funded by the NIH UDALL Center to create a well-characterized PD cohort to assess cognitive changes over time.  The PUC collects both longitudinal clinical, neuropsychological, and validated biomarker data.  The PRE-PUC began enrolling in 2010.  Participants are seen every other year.

Method: For two years, the COVID-19 pandemic has affected face-to-face (F2F) research visits at the PRE-PUC site.  For the first 6 months (March – September 2020), no research was conducted.  To maintain the PRE-PUC cohort and minimize COVID-19 risks to the participants, F2F visits were converted to virtual visits (VV).  The VV were a pared down version of the F2F, consisting of an update of intervening medical and surgical history, the Geriatric Depression Scale (GDS), MDS-UPDRS Parts I & II, a short test of thinking and memory (MoCA), and the Clinical Dementia Rating (CDR) Scale.  MDS-UPDRS Part III was performed for a small number of veterans who were seeing their clinicians F2F for clinical care.

Results: Of the 137 active participants at the beginning of the pandemic, 5 were deceased, 7 withdrew, and 6 were lost-to-follow up after 4 unsuccessful attempts at contact, 2 participants either had unstable internet or no internet access and wanted to stay in follow-up when F2F visits resumed (See Figure 1). One hundred VV were completed by one research coordinator, 3 F2F visits, and 9 UPDRS Part IIIs (See Table 1 for cohort demographics).
Withdrawal, dropout, and lost to follow-up rates were similar to pre-pandemic rates (See Figure 2).  Depression was low with only 4% (N = 4) reporting a score of ≥ 9 on the GDS and 11% (N = 11) reporting mild depression symptoms (GDS 5-8). Cognitive status and depression remained stable (See Table 2).  Patient reported Parkinsonian symptoms were reported with higher frequency/severity during the pandemic without adjustment for disease severity.

Conclusion: Although unable to perform the motor assessment for PD at the VV, the ability to offer a virtual option helped to retain the robust longitudinal PRE-PUC cohort during the pandemic years.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/virtual-visit-experience-of-the-portland-oregon-pacific-udall-center-during-covid-19/