Objective: We describe a novel interdisciplinary clinic for advanced Parkinson’s disease (PD) and Parkinsonian syndromes incorporating palliative care principles to improve quality of life.

Background: Management of late stage PD is difficult due to poor response to dopaminergic medications, severe disability and caregiver strain. Or clinic’s capacity is 3 new and 2 return patients on two half days per month at our tertiary academic center. Team comprises neurology providers, nurse coordinator, social worker, speech pathologist and physical therapist who communicate throughout the clinic to produce a unified care plan.

Methods: Retrospective survey.

Results: Over 6 months we saw 22 new patients. Common reasons for referral were caregiver and family support (100%), complex symptom management (75%) and advance care planning documents (75%). Depression (78% CES-D>16), caregiver strain (11% MCSI>30) and symptom burden (median ESAS-PD=52.5) along with poor quality of life (median PDQ-39=89.5) were noted. A survey of clients showed high levels of satisfaction. The majority felt we addressed their most troublesome symptoms (>80%), included family in health care decisions (80%), provided community resources (80%), addressed caregivers’ emotional needs (>50%), discussed end-of-life care documents (75%), and provided care unavailable in our standard movement disorders clinic (75%). 90% felt the interdisciplinary structure was advantageous and would recommend the clinic to others. 6/7 referring neurologists agreed or strongly agreed that our clinic benefitted their patients and they were satisfied with the care provided. 7/7 agreed or strongly agreed they would refer more patients and they would recommend the clinic to their colleagues. We estimate we saved providers 1.5 hours coordinating care and communication between providers and saved patients 5.35 hours, 234 miles of driving and $135.

Conclusions: This innovative clinic delivers high levels of patient and provider satisfaction along with time and money savings. We are pursuing further outcome studies to identify medical benefits.

« Back to 2016 International Congress

MDS Abstracts - https://www.mdsabstracts.org/abstract/a-novel-interdisciplinary-palliative-care-clinic-for-advanced-parkinsons-disease-and-parkinsonian-syndromes/