Objective: This study aims to evaluate the awareness and implementation of advanced care planning (ACP) in patients with neurodegenerative diseases in Japan.

Background: Although ACP may be important for providing appropriate care for patient’s dignity, there was little information of awareness and implementation of ACP of patients with neurodegenerative conditions in Japan. The aim of this study is to clarify the understanding of ACP of the patients having neurodegenerative diseases.

Method: An anonymous questionnaire was distributed to 150 patients with neurodegenerative diseases hospitalized to our hospital from August 2024 to January 2025. The questionnaire included demographic data, diagnosis, disease duration, views on end-of-life care, understanding of ACP, and  written documentation of ACP.

Results: The questionnaires were collected from 83 patients. Respondents’ mean age was 69.2 ±9.0years and their sex was 41 male, 38 female, and 3 unspecified. Their diagnoses were 62 with Parkinson’s disease, 7 with multiple system atrophy, 4 with spinocerebellar degeneration, 2 with progressive supranuclear palsy, 2 with spinocerebellar ataxia (SCA)3, 2 with SCA6, 1 with corticobasal degeneration, 1 with SCA31, and 1 with unknown disease. Mean duration of disease  was 5.3 years. 44 patients answered that they had desire about their end-of-life care. Three and 16 patients had experiences of “extensive discussions” and “some discussions” with their families about ACP, respectively. 60 patients have never discussions about it. 59 patients agreed with the idea that having a written document about ACP should be implemented as possible. Among them, only 4 had already made them. Regarding awareness of ACP, 63 patients were “unaware,” 15 had “heard of it but knew little,” and 3 had “good knowledge. After explaining the purpose of ACP, 65 patients said they agreed, 1 disagreed and 13 were unsure about ACP.

Conclusion: Compared to previous report, ACP were not so common in Japan as in other western countries. Although many patients were in favor of discussing and planning their end-of-life care, ratio of understanding of ACP in patients turned out low. Only a few actually made written directives for ACP. To help patients with neurodegenerative diseases to reveal their desire about end-of-life care, it is important to foster knowledge about APC in patients and active implement of ACP.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/awareness-and-implementation-of-advanced-care-planning-in-patients-with-neurodegenerative-diseases/