Category: Palliative Care
Objective: To describe the International Neuropalliative Care Society (INPCS), its mission and values, and highlight the importance of palliative care for persons with movement disorders.
Background: Neuropalliative care is an emerging field, dedicated to improving quality of life for people with neurological disorders, and their families, using a palliative care framework. People with Parkinson Disease (PD) and related disorders have significant palliative care needs, including high symptom burden, impact of disease on quality of life for both patients and caregivers, as well as variable disease trajectories affecting end of life care planning (1). Importantly, these needs are poorly met under current care models.
Method: The INPCS was founded in 2019 with a vision of high quality, inclusive, person-centred care for all persons affected by a neurological illness. The unique value is its collaborative approach to: 1) Clinical care – the society promotes universal access to palliative care, including the upskilling of neurologists to provide palliative care, enabling care providers to identify key inflection points in PD illness trajectory that could trigger referral to specialist palliative or hospice care, and by assisting in the development and integration of neuropalliative care models into inpatient and outpatient services. 2) Research – INPCS facilitates inter-professional collaboration between neurologists, palliative care specialists, geriatricians, allied healthcare professionals, and spiritual care providers to address research questions such as current knowledge gaps in effectiveness, cost-effectiveness and timing of neuropalliative interventions for persons with PD and related disorders, as well as the geographical differences in service delivery. 3) Education – INPCS will develop or highlight educational and practical material for care providers, trainees and patients, such as tools for shared decision making and advance care planning. 4) Advocacy – INPCS advocates for creation and use of PD-specific neuropalliative best practice recommendations and promotes inclusion of patients, families and caregivers as board and active members so that they have a central voice in shaping societal priorities and health policies.
Conclusion: The INPCS is a novel solution to the longstanding problem of limited palliative care for persons living with PD and related disorders.
References: 1. Kluger BM, Miyasaki J, Katz M, Galifianakis N, Hall K, Pantilat S, Khan R, Friedman C, Cernik W, Goto Y, Long J, Fairclough D, Sillau S, Kutner JS. Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial. JAMA Neurol. 2020 May 1;77(5):551-560. doi: 10.1001/jamaneurol.2019.4992. PMID: 32040141; PMCID: PMC7042842.
To cite this abstract in AMA style:U. Ramanathan, C. Chou, E. Richfield, D. Oliver, C. Creutzfeldt, B. Kluger. Advocacy for Neuropalliative Care in Parkinson Disease Care: The Need for an International Neuropalliative Care Society (INPCS) [abstract]. Mov Disord. 2021; 36 (suppl 1). https://www.mdsabstracts.org/abstract/advocacy-for-neuropalliative-care-in-parkinson-disease-care-the-need-for-an-international-neuropalliative-care-society-inpcs/. Accessed December 7, 2023.
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