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Systematic Review Highlights Key Symptoms Impacting Quality of Life in Patients With Parkinson Disease and Care Partners
People with Parkinson disease (PD) and their care partners (CPs) face significant challenges affecting their health-related quality of life (HRQOL), with different PD symptoms impacting them as the disease progresses, according to a study published in Neurology.
A recent systematic review, combining data from 70 studies, explored motor and nonmotor symptoms affecting HRQOL for patients with PD and their CPs. “We aimed to produce an integrated set of qualitative and quantitative evidence to understand which PD motor and nonmotor symptoms affect the HRQOL of [people with PD (PwP)] and CP and to study those priorities across PD progression by comparing early disease with advanced disease studies,” explained Michelle Tosin, PhD, Department of Neurological Sciences, Rush University, Chicago, IL, and coauthors.
Across all stages of PD, both patients and CPs consistently identified “motor functionality,” “mood,” “cognition,” “gait, balance, posture, and falls,” and “nighttime sleep disorders” as the most impactful domains. At the early stages of PD, mood disturbances were particularly concerning for both patients and CPs, highlighting the need for mental health support in initial treatment plans. In more advanced stages, pain became the primary issue for patients, whereas CPs were more impacted by managing their partner’s psychiatric symptoms, such as hallucinations and impulsivity.
The study relied on qualitative and quantitative research data involving the self-reported experiences of 42 974 individuals with PD and 5530 care partners globally. Most of these studies were conducted in outpatient settings, with participants varying in disease duration and severity. For early PD, motor symptoms such as tremor and nonmotor symptoms such as mood issues were prominent. However, in advanced stages, symptoms such as pain and psychiatric challenges became more significant, underlining the evolving needs in PD care.
The findings suggest that addressing HRQOL in PD requires nuanced, stage-specific approaches that emphasize patient and caregiver perspectives. “By integrating quantitative and qualitative data from studies investigating this multidimensional construct worldwide, including those implemented in developing countries, we could map the PD symptoms that most affect the HRQOL of PwP and CP,” concluded the study authors.
Reference
Tosin MH, Goetz CG, Stebbins GT. Patient with Parkinson Disease and care partner perceptions of key domains affecting health-related quality of life: systematic review. Neurology. 2024;102(3):e208028. doi:10.1212/WNL.0000000000208028