Objective: The Advanced Care Team for Parkinson’s (ACT-PD) pilot program at the Calgary Movement Disorders Clinic aimed to bridge gaps in specialized palliative care for patients with advanced Parkinsonian syndromes through a structured, multidisciplinary approach.

Background: Over 100,000 Canadians live with Parkinson’s disease (PD) and related disorders, a number expected to double by 2030. Despite this, access to specialized neurological and palliative care remains limited, resulting in high symptom burden and fragmented care.

Method: ACT-PD provided quarterly multidisciplinary consultations with as-needed access, integrating movement disorder neurology, palliative care, social work, psychology, and spiritual care. Interventions included advance care planning, shared decision-making, symptom optimization, pain and mood management, caregiver support, and coordination with community resources and long-term care facilities. Outcomes were assessed every three months, capturing symptom burden, quality of life, caregiver strain, and healthcare utilization. Demographic and clinical characteristics were analyzed for subgroup differences.

Results: Among 113 patients (64.3% male, mean age 62.6 years, mean disease duration 10.6 years), 59.8% had PD, 17.5% Progressive Supranuclear Palsy (PSP), 14.4% Multiple System Atrophy, 5.2% Corticobasal Syndrome, and 3.1% Lewy Body Dementia. Overall, symptom burden decreased significantly with ESAS-PD scores decreased from 40.5 to 28.7, with men with PD showing a 19-point reduction and men with PSP (ages 65-80) improving by 22 points.  Caregiver burden (ZBI-12) declined from 25.83 to 20.23, and particularly Middle Eastern women (ages 61-75), showed the greatest improvement in quality of life (+9 points). 92% of participants engaged in advance care planning, leading to 58% modifying their goals of care. Among those who passed away, 70% had their preferred place of death honored.

Conclusion: ACT-PD improved symptom management, advance care planning, caregiver well-being, and healthcare utilization, while ensuring most patients received end-of-life care in their preferred setting. These findings support the need for expanded access to multidisciplinary palliative care in advanced Parkinsonian syndromes.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/specialized-palliative-care-for-advanced-parkinsonian-syndromes-bridging-the-gap/