Impact of caregiver characteristics on patient outcomes in Parkinson’s disease
Rudmila Rashid1, Nabila Dahodwala2
1University of Pennsylvania, 2Parkinson's disease and Movement Disorders Center
To determine the influence of caregiver presence and depression on Parkinson’s disease (PD) patient outcomes.

Caregivers are an integral part of PD care. Despite the growing role of caregivers, lack of information exists regarding how caregivers impact PD outcomes.

We conducted a retrospective cohort study using the Parkinson’s Foundation Parkinson’s Outcomes Project data. For each patient and caregiver included, we selected two matched controls without caregivers. We measured the following outcomes annually from up to four follow-up visits: health-related quality of life (QoL) using the PDQ-39 and number of hospitalizations and ED visits. Separately, we estimated the independent impact of caregiver presence and depression on patient outcomes with mixed-effects linear and Poisson regressions. Adjusted models controlled for patient age, gender, disease duration, cognition, H&Y stage, caregiver demographics.

1,333 PD patients (mean age 67.0 years; 33.9% female) and 454 caregivers (mean age 65.6 years, 71.8% female) with mean 1.56 follow-ups were included. Patients with caregivers had worse QoL (26.35±15.42 vs. 25.88±16.05, p=0.03; caregiver effect 1.90, 95% CI [0.19, 3.61]) and a greater number of annual ED visits (0.49±1.06 vs. 0.38±0.78, p=0.05; caregiver effect .18, 95% CI [0.00., 0.35]). Having a caregiver with a greater depressive symptoms led to a worse QoL (33.78±17.71 vs. 24.50±14.19, p<0.01; depression symptom effect 0.43, 95% CI (0.28, 0.58), and a greater number of annual ED visits (0.66±1.25 vs. 0.45±1.00, p=0.38; depression effect 0.15, 95% CI [-0.18, 0.48]).


PD patients with caregivers had worse outcomes than those without caregivers, possibly indicating greater disease severity missed by traditional motor/cognitive measures. Additionally, patients with depressed caregivers were also more likely to have worse QoL and higher ED use than patients with caregivers without depression. This research indicates that caregivers need additional resources, and interventions targeting caregivers could potentially improve patient outcomes.