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. 2022 Jan 12;19(2):803.
doi: 10.3390/ijerph19020803.

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Andrea Giordano  1 , Ludovica De Panfilis  2 , Marta Perin  2   3 , Laura Servidio  1 , Marta Cascioli  4 , Maria Grazia Grasso  5 , Alessandra Lugaresi  6   7 , Eugenio Pucci  8 , Simone Veronese  9 , Alessandra Solari  1
Affiliations

Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Andrea Giordano et al. Int J Environ Res Public Health. .

Abstract

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.

Keywords: advance care planning; dementia; end of life care; ethics; nervous system diseases; neurodegenerative disorders; palliative care; review literature; shared decision making.

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Conflict of interest statement

A.L. has served as a Biogen, Merck Serono, Novartis, Roche, Sanofi/ Genzyme and Teva Advisory Board Member. She received congress and travel/accommodation expense compensations or speaker honoraria from Biogen, Merck, Mylan, Novartis, Sanofi/Genzyme, Teva and Fondazione Italiana Sclerosi Multipla (FISM). Her institutions received research grants from Novartis. The other authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Study flow diagram. ACP is advance care planning.
Figure 2
Figure 2
Number of studies by disease and by study design. ALS is amyotrophic lateral sclerosis; MND is motor neuron disease; RCT is randomized controlled trial.
See this image and copyright information in PMC

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