Objective: To compare caregiver burden and health-related quality of life (HRQoL) between caregivers of patients with advanced Parkinson’s disease (aPD) and non-advanced PD (NaPD), and to identify domains contributing to differences in caregiver strain.

Background: Progression of PD leads to accumulating motor and non-motor symptoms that increase caregiving demands. Despite this, the relationship between disease stage, caregiver strain, and caregivers’ HRQoL has not been fully clarified.

Method: This nationwide real-world study was conducted as a pharmacy-based survey among caregivers of levodopa-treated PD patients in Finland. Caregiver burden was assessed using the Modified Caregiver Strain Index (MCSI), and HRQoL using the EQ-5D-5L. Advanced PD status of the patient under care was defined using the 5-2-1 criteria. The analysis included 221 caregivers (NaPD n=106; aPD n=114; data missing n=1). Mean caregiver age was 69 years (SD 11), 80% were female. Group differences were evaluated using descriptive statistics and multivariable linear regression adjusting for confounders selected based on their contribution to model fit. Item-level analyses of the MCSI were performed to identify domains driving group differences.

Results: Caregivers of patients with aPD reported significantly higher overall strain than caregivers of NaPD patients (mean MCSI 11.4 vs. 6.7; unadjusted mean difference 4.7 points, p<0.001), with aPD status remaining independently associated with higher strain after adjustment. In contrast, caregiver HRQoL did not differ between groups (mean EQ-5D index 0.78 in both NaPD and aPD; p>0.6). Item-level analyses showed that higher strain (p<0.001) in aPD caregivers was driven by physical burden, confinement, inconvenience, and family adjustments, whereas other domains contributed less.

Conclusion: Advanced PD, defined using the 5-2-1 criteria, is associated with substantially higher caregiver strain. Results based on the generic EQ-5D suggest further research with more sensitive HRQoL instruments is warranted.  These findings suggest that progression to advanced PD is associated with increasing caregiver support needs and burden that may go unrecognized in routine care, as they are not adequately captured by generic quality-of-life measures. The results highlight the need for clinicians to assess caregiver strain in advanced disease.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/caregiver-burden-in-advanced-versus-non-advanced-parkinsons-disease-strain-and-health-related-quality-of-life/