Objective: To evaluate the feasibility of building a remote patient monitoring (RPM) system for measuring Parkinson symptom severity.

Background: The characteristic objective measures (tremor, rigidity, bradykinesia) associated with parkinsonism are now understood to be a late-stage, downstream consequence of a degenerative process decades in the making. The community needs a continuous outcome measure that does not require a clinic visit, is sensitive early in the disease, does not fluctuate throughout the day, includes both motor and non-motor symptoms, and correlates with quality of life and existing measures of severity.

Method: The Patient-Reported Outcomes in PD (PRO-PD) was designed to be an entirely subjective, patient-centered scale useful to patients, providers, and researchers as a RPM system. Built on the research-restricted REDCap server, the PRO-PD was completed over 40,000 times by users from 43 countries as part of several population studies and clinical trials. The goal of this project was to evaluate the validity of the PRO-PD scale and if valid, determine the feasibility of making the scale available to the general population.

Results: The PRO-PD showed acceptable validity with a 95.1% completion rate, non-significant floor and ceiling effects, acceptable skew and kurtosis, Conbach’s alpha of >0.75 for the total scale and subscales with acceptable unidimentionality. Confirmatory factor analysis (CFI = 0.841) shows room for improvement for factors. Moderate to strong correlation with legacy and quality of life measures were seen in Parkinson’s Disease. Responsiveness was shown by mean change per year in PRO-PD score of 38 (±14) and significant change in PRO-PD score with dopamine replacement therapy. Having demonstrated acceptable validity, an app was designed, and the PRO-PD become freely available on iOS and Android platforms in January 2023. In the first two months, over 600 users from 114 distinct countries have generated over 1600 PRO-PD reports.

Conclusion: The PRO-PD demonstrates validity, and it was possible to create an app for smartphones and tablets capable of providing global access to the scale. Further app validation is warranted, and a panel of experts should determine the need for translation to other languages and scale revision. Whether researchers and providers find the PRO-PD reports useful for goal setting or identifying at-risk patients has yet to be determined.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/validation-of-a-remote-patient-monitoring-system-for-parkinson-symptom-severity/