Objective: To compare satisfaction with medical care among people with advanced Parkinson’s Disease (PD) and their caregivers at baseline (best usual care in a tertiary referral center) and after one year of interdisciplinary home visits; to identify predictors of greater satisfaction.

Background: Patient and caregiver satisfaction are frequently used as metrics of patient-centeredness; yet, satisfaction with care has only been minimally explored in PD. In cross-sectional studies in the US and Sweden, 57-59% of individuals with PD expressed high satisfaction with their medical care on study-specific scales. Using a validated assessment of client satisfaction with care, we sought to compare satisfaction with best usual PD care at baseline and after one year of quarterly home visits in individuals with advanced PD and their caregivers.

Method: Among homebound individuals with advanced PD entering a trial of interdisciplinary home visits, we administered the Client Satisfaction Inventory-Short Form (CSI-SF, 9-item, 7-pt Likert scale survey, ranging 0 (low) to 100 (high)) at Visit 1, prompting patients and caregivers, individually, to reflect on their usual PD care at Rush University. After one year, we re-administered CSI-SF regarding home visit satisfaction. We used paired t-tests to assess differences over time and identify characteristics predicting >10-pt improvement in satisfaction.

Results: Among patients (n = 48), CSI-SF improved from baseline mean 87.05/100 (SD 14.14) to 95.06 (SD 10.55) after one year of home visits (p = 0.002). Among caregivers (n = 47), satisfaction improved from 91.09 (SD 12.90) to 98.54 (SD 3.82,p = 0.001). Younger age predicted >10-pt improvement in patient CSI-SF: mean 74.80 years (SD 7.12) in 18 improvers vs. 79.96 (6.98) among <10-point improvers (n = 30), p = 0.02. Change in patient’s mobility predicted >10-pt improvement in caregiver CSI-SF: mean improvement of 1.94 pts on PDQ-39 mobility domain (SD 17.05) among 16 >10-pt improvers vs. mean worsening of 13.16 pts on PDQ-39 mobility (SD 26.01) among 31 <10-pt improver caregivers.

Conclusion: People with advanced PD and their caregivers reported higher satisfaction with usual care than previously reported, and demonstrated even greater satisfaction with home visits. Younger patients were more likely to report significant gains in satisfaction. A marked ceiling effect was noted for all.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/happy-to-be-home-satisfaction-with-interdisciplinary-home-visits-among-individuals-with-advanced-parkinsons-disease-and-their-caregivers/