Reported Symptoms in Prodromal and Early Motor Parkinson's Disease: A Scoping Review on the Patient Perspective

The lived experience of Parkinson's disease (PD) includes motor and non-motor symptoms. There is a need to capture the earliest patient experiences in a sensitive and reliable manner for the successful development of interventions that may delay clinical progression in PD.

Our aim was to synthesize published literature about patient-reported symptoms in prodromal and early motor stages of PD and develop a conceptual framework of the earliest lived experiences in PD.

We conducted a scoping review of the published literature in MEDLINE, EMBASE, SCOPUS, and CINAHL databases and abstracted patient-reported symptoms from included studies reporting on prodromal or early motor stages of PD populations.

We included 59 articles with data from 64 cohorts (prodromal PD: n = 20/64; 31%, early motor PD: n = 44/64, 69%). Overall, the 10 most frequent symptoms (of 85 standardized reported symptoms [SRSs]) were non-motor. SRSs were grouped into symptom domains (behavioral, cognition, dysautonomia, motor, sensory, sleep, and others) and functional domains (activities of daily living, communication, sexual, and social impairment). The Movement Disorder Society sponsored revision of the Unified Parkinson's Disease Rating Scale parts Ib and II (n = 13/64, 20%) and ad hoc questionnaires (n = 12/64, 19%) were the most frequently used measurement tools.

At prodromal and early motor stages of PD, individuals report symptoms of a diverse range of motor and non-motor domains and higher-level functional domains. There is a need to capture the full spectrum of this lived experience in a new patient-reported clinical outcome measure for clinical trials in the earliest clinical stages of PD.