The following is a summary of “Patient With Parkinson Disease and Care Partner Perceptions of Key Domains Affecting Health-Related Quality of Life,” published in the January 2024 issue of Neurology by Tosin et al.
Understanding people with PD (PwP) and care partners’ (CP) symptom priorities is crucial for personalizing effective Parkinson’s disease (PD) programs.
Researchers conducted a retrospective study to uncover how PD motor and nonmotor symptoms impact HRQOL in PwP and CP, comparing symptom priorities across disease severity levels through a mixed-methods approach.
They searched MEDLINE, PsycINFO, Web of Science, Embase, Scopus, ProQuest Dissertations and Theses Global, and the Michael J. Fox Foundation Data (June 29, 2022). Inclusion criteria covered qualitative, quantitative, and mixed-method studies exploring PD symptom priorities in PwP and CP. The methodological quality of eligible studies was assessed using the Mixed-Methods Appraisal Tool. Terms were categorized thematically through mapping and coding, and evidence underwent independent syntheses with quantitative data transformed into qualitative formats.
The results showed 7,716 studies; 70 were included, providing qualitative (n = 13), quantitative (n = 53), and mixed (n = 4) evidence with 604 mapped terms representing 11 motor and nonmotor symptom categories identified by PwP and CP. In all PD stages, “motor functionality,” “mood,” “cognition,” “gait, balance, posture, and falls,” and “nighttime sleep disorders” influenced HRQOL for both PwP and CP. In early disease, “mood” was identified as the most impactful domain. In advanced PD, PwP highlighted “pain” as the most affecting domain, while CP emphasized “psychiatric symptoms.” In the advanced stage, both PwP and CP equally considered “gait, balance, posture, and falls” as the second most impactful domain affecting their HRQOL.
Investigators concluded that while motor symptoms topped the list across disease stages, nonmotor priorities shifted, highlighting the need for individualized care and incorporating the “patient voice” in PD management.