Advance Care Planning in Neurodegenerative Disorders: A Scoping Review

Andrea Giordano, Ludovica De Panfilis, Marta Perin, Laura Servidio, Marta Cascioli, Maria Grazia Grasso, Alessandra Lugaresi, Eugenio Pucci, Simone Veronese and Alessandra Solari
Additional contact information
Andrea Giordano: Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, 20133 Milan, Italy
Ludovica De Panfilis: Bioethics Unit, Azienda USL-IRCCS di Reggio Emilia, 42100 Reggio Emilia, Italy
Marta Perin: Bioethics Unit, Azienda USL-IRCCS di Reggio Emilia, 42100 Reggio Emilia, Italy
Laura Servidio: Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, 20133 Milan, Italy
Marta Cascioli: Hospice ‘La Torre sul Colle’, Azienda USL Umbria 2, 06049 Spoleto, Italy
Maria Grazia Grasso: Multiple Sclerosis Unit, IRCCS S. Lucia Foundation, 00179 Rome, Italy
Alessandra Lugaresi: Dipartimento di Scienze Biomediche e Neuromotorie, Università di Bologna, 40126 Bologna, Italy
Eugenio Pucci: UOC Neurologia, ASUR Marche-AV4, 63900 Fermo, Italy
Simone Veronese: Fondazione FARO, 10133 Turin, Italy
Alessandra Solari: Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, 20133 Milan, Italy

IJERPH, 2022, vol. 19, issue 2, 1-20

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; review literature; palliative care; end of life care; ethics; nervous system diseases; neurodegenerative disorders; shared decision making; dementia (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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