Discordance between Reports of Internalized Symptoms in Persons with Parkinson's Disease and Informants: Results from an Online Survey

Background Self‐report of motor and non‐motor symptoms is integral to understanding daily challenges of persons with Parkinson's disease (PwPD). Care partners are often asked to serve as informants regarding symptom severity, raising the question of concordance with PwPD self‐reports, especially regarding internalized (not outwardly visible) symptoms. Objectives Concordance between PwPD and informant ratings of motor and non‐motor symptoms was evaluated across multiple domains. Methods In 60 PwPD‐informant pairs, we compared ratings on 11 online self‐report measures comprising 33 total scores, 2/3 of which represented purely internalized symptoms. For discordant scores, multiple regression analyses were used to examine demographic/clinical predictors. Results Though concordant on 85% of measures, PwPD endorsed more non‐motor symptoms, bodily discomfort, stigma, and motor symptoms than informants. For PwPD, younger age, greater disease severity, and female gender predicted discordance. Conclusions Discordance between PwPD and informants on measures assessing symptoms that cannot be outwardly observed may require targeted education.