Category: Palliative Care
Objective: To review the literature and framework of the Supportive Care and Wellness Program at Weill Cornell Parkinson’s Disease & Movement Disorders Institute for people with Parkinson’s (PwP).
Background: PwP have high rates of disability from motor and non-motor symptoms. Supportive care has demonstrated benefits in oncology and is increasingly being utilized in neurology. Particular attention is being paid to early outpatient intervention to improve the quality of life (QoL) of those with progressive neurologic disorders and their caregivers.
Method: We performed a literature search of PUBMED and Google Scholar using “Parkinson’s disease” “movement disorders” and “neurologic disease” AND (“palliative care” or “supportive care”). Non-English papers were excluded, as were studies published before 2007. Meta-analyses, randomized controlled trials and observational studies were reviewed with a focus on measures to evaluate QoL and palliative care outcomes.
Results: We included 22 papers that met our search criteria: 2 meta-analyses, 6 randomized controlled trials, 11 observational studies, and 3 papers on delivery of palliative care in a multidisciplinary clinic. Palliative care had clinically significant improvements in QoL (3 studies), non-motor symptom burden (4 studies), advanced care planning (4 studies), patient and caregiver satisfaction (3 studies), and healthcare utilization (2 studies). Secondary analyses of multidisciplinary care delivery in an outpatient setting revealed higher benefit in QoL and caregiver burden in those with higher needs. Leveraging prior results, our center established the LIFT Program, led by NPs, social workers, and neuropsychology trainees, in December 2023 to address the comprehensive needs of our patients and caregivers. Through ongoing evaluation and adaptation (utilizing pre- and post- surveys), we aim to continually refine our clinic model to meet the evolving needs of our patients in a convenient and cost-effective manner by providing resources on adjunctive therapies, advanced planning, and disease related education, both in person and virtually.
Conclusion: There is well-established consensus on the long term benefit of palliative care for patients and caregivers. Challenges include resources, education, stigma and time to referral. Our new program seeks to overcome those challenges to incorporate multi-disciplinary teams and hybrid resources to enhance care.
To cite this abstract in AMA style:
K. Farnes, H. Ooi, N. Hellmers, M. Lopez, H. Sarva. Developing a Supportive Care and Wellness Program for Parkinson’s Patients [abstract]. Mov Disord. 2024; 39 (suppl 1). https://www.mdsabstracts.org/abstract/developing-a-supportive-care-and-wellness-program-for-parkinsons-patients/. Accessed October 6, 2024.« Back to 2024 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/developing-a-supportive-care-and-wellness-program-for-parkinsons-patients/