Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Advance care planning (ACP) is increasingly acknowledged as a key step to enable patients to define their goals/preferences for future medical care, together with their carers and health professionals. We aimed to map the evidence on ACP in neurodegenerative disorders. We conducted a scoping review...

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Bibliographic Details
Published in:International journal of environmental research and public health 2022-01, Vol.19 (2), p.803
Main Authors: Giordano, Andrea, De Panfilis, Ludovica, Perin, Marta, Servidio, Laura, Cascioli, Marta, Grasso, Maria Grazia, Lugaresi, Alessandra, Pucci, Eugenio, Veronese, Simone, Solari, Alessandra
Format: Article
Language:English
Subjects:
Advance Care Planning
Advance directives
Amyotrophic lateral sclerosis
Brain cancer
Brain tumors
Caregivers
Clinical decision making
Clinical medicine
Clinical trials
Decision making
Dementia
Dementia disorders
Disease
Health Personnel
Humans
Neurodegenerative Diseases - therapy
Palliative Care - methods
Patients
Review
Systematic review
Values
Verbal communication
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Summary:Advance care planning (ACP) is increasingly acknowledged as a key step to enable patients to define their goals/preferences for future medical care, together with their carers and health professionals. We aimed to map the evidence on ACP in neurodegenerative disorders. We conducted a scoping review by searching PubMed (inception-December 28, 2020) in addition to trial, review, and dissertation registers. From 9367 records, we included 53 studies, mostly conducted in Europe (45%) and US-Canada (41%), within the last five years. Twenty-six percent of studies were qualitative, followed by observational (21%), reviews (19%), randomized controlled trials (RCTs, 19%), quasi-experimental (11%), and mixed-methods (4%). Two-thirds of studies addressed dementia, followed by amyotrophic lateral sclerosis (13%), and brain tumors (9%). The RCT interventions (all in dementia) consisted of educational programs, facilitated discussions, or videos for patients and/or carers. In conclusion, more research is needed to investigate barriers and facilitators of ACP uptake, as well as to develop/test interventions in almost all the neurodegenerative disorders. A common set of outcome measures targeting each discrete ACP behavior, and validated across the different diseases and cultures is also needed.
ISSN:1660-4601
1661-7827
1660-4601
DOI:10.3390/ijerph19020803