Abstract Details

Title Advance directives of treatment in ALS patients: The Piedmont and Valle d’Aosta register experience in the 2008-2013 period.

Topic Pain

Presentation(s) P2 - Poster Session 2 (5:30 PM-6:30 PM)

Poster/Presentation
Number 7-053

Objective

The first aim is to assess the role, efficacy and diffusion of advances directives (ADs) in a population-based series of amyotrophic lateral sclerosis (ALS) patients. The second aim is to find if there is a relationship between the choice to undergo tracheostomy and sex, date of disease onset, disease phenotype, civil state, use of NIV and PEG/RIG.

Background End-of-life care is an important aspect of ALS management. However, despite the role that palliative interventions could play in ALS and other neurodegenerative disorders management, in most countries palliative care is still not part of neurological training.

Design/Methods

We included all the 452 patients resident in province of Turin, Piedmont, Italy, diagnosed in the 2008-2013 period. Data on discussion of ADs, cause and place of death and Palliative Care Service (PCS) activation were recorded.

Results On June 1^st, 2017, 365 (80.8%) patients were dead and 87 (19.2%) alive. ADs were discussed with 244 patients (54% of the dead/tracheostomized patients). If we focus only on patients died or tracheostomized at the end of follow-up (383 out of 452) we could observe that % of assessment of ADs is higher: 59,5% (228/383) vs 54%. If we focus on patients followed by the ALS Centre, ADs have been assessed in 65,7% of patients died or tracheostomized. ADs were dispositions were fulfilled in 92.1% of cases. Tracheostomy was performed in 12,6% of patients. Gender, education, and marital status did not influence the discussion and the disposition of ADs. We observed that the only factor statistically related to the choice to undergo tracheostomy is the presence, at the moment of the decision, of PEG/RIG.

Conclusions This survey confirmed the fundamental role of ADs and demonstrate their efficacy. Further efforts are needed to improve diffusion of ADs and PCS among ALS patients.

Authors/Disclosures
Cristina Moglia (University of Torino) PRESENTER	Cristina Moglia has nothing to disclose.
	No disclosure on file
Antonio Canosa	Antonio Canosa has nothing to disclose.
Alessandro Bombaci, MD (Rita Levi Montalcini Department of Neuroscience, University of Turin)	Dr. Bombaci has nothing to disclose.
Umberto Manera, MD (Department of Neuroscience "Rita Levi Montalcini" - University of Torino)	Dr. Manera has nothing to disclose.
Rosario Vasta, MD (University of Turin, Department of Neurosciences)	Dr. Vasta has nothing to disclose.
Adriano Chio, MD, FAAN (Dept. of Neuroscience, University of Turin)	Dr. Chio has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Cytokinetics. Dr. Chio has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Mitsubishi. Dr. Chio has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biogen. Dr. Chio has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Corcept.
Andrea Calvo, MD, PhD, FAAN (Dept. of Neuroscience, University of Turin)	Dr. Calvo has nothing to disclose.

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