Objective:

We present the preliminary results of a 2-year Palliative Care (PC) pilot program for Advanced Parkinsonian Syndromes (APS).

Background:

APS -such as Parkinson’s disease (PD), Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), Corticobasal Syndrome (CBS), and Lewy Body Dementia (LBD)- profoundly impact both patient and caregivers, with relentless symptoms that erode quality of life (QoL) and increase caregiver burden. While evidence supporting PC interventions is growing, it remains limited.

Design/Methods:

A prospective cohort of participants with moderate to high palliative needs was enrolled between 10/2022 and 10/2024, receiving care from a multidisciplinary team provided care through outpatient visits every 3 months, with interim virtual follow-ups. The focus was on symptom management and psychosocial support for both patients and caregivers. Interventions included neurological management, PC nursing, psychological support, social work and spiritual care. Standardized assessments (ESAS, QoL-AD and ZBI-12) tracked symptom burden and QoL, while healthcare utilization data was analyzed for a cost-effective analysis (CEA).

Results:

A total of 113 participants were enrolled, with 98 completing at least one visit. Diagnoses included PD (59.8%), PSP (17.5%), MSA (14.4%), CBS (5.2%), and LBD (3.1%). After 3 visits, symptom burden decreased (ESAS: 40.5 to 33.2, p = 0.04), QoL improved (QoL-AD:28.1 to 31.2, p = 0.03), and caregiver burden was reduced (ZBI-12: 25.8 to 20.2, p <0.0001).  Twenty-seven patients died, 70% in their preferred setting. Four patients pursued medical assistance in dying.  A preliminary CEA estimated savings of 2.6 million CAD from reduced intensive care unit admissions alone. 

Conclusions:

As the need for PC in APS gains greater recognition, this 2-year pilot program demonstrated significant improvements in symptom burden, QoL, caregiver burden, and healthcare utilization. These results underscore the importance of early PC integration in APS, while highlighting the need for ongoing research to further strengthen the evidence for each intervention.