Objective: To examine overall and domain-specific quality of life (QoL) using the Parkinson’s Disease Questionnaire (PDQ-39) among homebound individuals with advanced PD prior to and after one year of interdisciplinary home visits to determine whether this model of care mitigates QoL decline.

Background: In cross-sectional studies validating the PD-specific PDQ-39, patients rated HY 3 (moderate) scored a mean 36.5 (SD 19.6) on the PDQ-39 Summary Index (PDQ-SI), and individuals HY 4-5 (severe) scored a mean of 48.6 (15.1). In longitudinal studies, patients with advanced PD demonstrate worsening QoL over time. In a small pilot of interdisciplinary home visits, we reported a stabilization of QoL despite progression of PD severity. This was limited by a non-PD-specific QoL scale. We now use the PDQ-39 to examine longitudinal change in overall and domain-specific QoL in advanced PD patients receiving home visits for one year.

Method: Enrolled participants had a diagnosis of PD, HY 3-5, met Medicare homebound criteria, lived within 40 miles of Rush University, and consented to 4 home visits (nurse and social worker in-home, neurologist via telemedicine) over 12 months. Change from Visit 1 (V1) to Visit 4 (V4) in PDQ-SI and individual domains assessed via paired t-tests.

Results: Among 65 enrolled participants (68% male, mean age 78.9, 78% HY 4-5, median 15 years PD duration): 51 completed Visit 4 (9 died, 5 withdrew). We found no significant decline in PDQ-SI over one year (V1 mean 38.4 (SD 14.0); V4 37.7 (12.7), p = 0.72). We detected worsening mobility (V1 mean 65.0 (19.9) vs. V4 73.7 (20.3), p = 0.01) and worsening ADLs (V1 mean 55.8 (22.6) vs. V4 62.68 (24.7), p = 0.03). Bodily discomfort improved (V1 mean 43.8 (27.1) vs. V4 34.3 (24.4), p = 0.03). Improvements in stigma (23.6 (25.0) vs. 17.5 (21.8), p = 0.08) and communication (38.6 (23.8) vs. 33.3 (22.4) p = 0.09) approached clinical and statistical significance.

Conclusion: Contrary to the expectation that QoL will necessarily worsen with PD over time, we again found that an interdisciplinary home visit model of care may uncouple progression of disease severity from QoL using a validated, PD-specific QoL measure. Additionally, we detected improvements in bodily discomfort, stigma, and communication. Interdisciplinary models of care offer promise for palliation of symptoms and QoL in people with advanced PD.

« Back to MDS Virtual Congress 2021

MDS Abstracts - https://www.mdsabstracts.org/abstract/stabilization-of-overall-quality-of-life-via-interdisciplinary-home-visits-among-individuals-with-advanced-pd/