TORNA ALL’ELENCO

Palliative approach in amyotrophic lateral sclerosis: A population-based study in Italy in Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

2013
ASL Torino 4

Tipo pubblicazione

Conference Abstract

Autori/Collaboratori (11)Vedi tutti...

Ilardi A
RSA Villa Serena, Bologna (BO), Italy
Cammarosano S
RSA Villa Serena, Bologna (BO), Italy
Manera U
RSA Villa Serena, Bologna (BO), Italy

et alii...

Abstract

Background: Amyotrophic lateral sclerosis (ALS) is an adult-onset neurodegenerative disorder involving both upper and lower motor neurons; since the disease has a fatal course, patients' optimal management requires a palliative approach with the aim of improving quality of life (QoL) through the evaluation and treatment of clinical symptoms and respect of patients' decisional autonomy. Aims: To evaluate the accessibility to Palliative Care Service (PCS) and the discussion rate of advanced directives in a population-based series of ALS patients' resident in Piemonte, northern Italy. Methods and Results: In our study, we enrolled 187 patients with definite or probable ALS according to the revisited El Escorial criteria, diagnosed over a period of 3 years, from 1 January 2008 through 31 December 2010, in the province of Torino, Piemonte, Italy. Ninty-nine patients were male (mean age at onset: 66.2 years (SD 9.9)), 88 were female (67.1 years (SD 10.8)). In 128 cases, the onset was spinal, while in the remaining 59 onset was bulbar; 172 patients had a sporadic ALS, 15 had a familial form of the disease. At the final date of the follow-up (1 April 2013), 139 patients were dead. In our ALS population, 41 patients (21.9% of all cases and 29.5% of deceased patients) were referred to PCS. The discussion of end-of-life issues was performed with 101 (54.0%) patients: 16 opted for tracheostomy, 81 refused tracheostomy, and 4 were uncertain. Patients' advanced directives were followed in 90.6% of cases. We found no influence of gender, age at onset, ALS phenotype, marital status, and the use of NIPPV on patients' choice about tracheostomy, while patients performing PEG were significantly more favorable to undergo tracheostomy (p = 0.0005). Most patients died at home, as previously observed, but patients referring to PCS received more frequent palliative sedation (p = 0.0001). Finally, in our ALS population, 12.6% of patients underwent tracheostomy, in keeping with a previ

DOI : 10.3109/21678421.2013.838414/009

Keywords

quality of life; adult; follow up; diseases; gender; phenotype; onset age; tracheostomy; patient; palliative therapy; Italy; population; amyotrophic lateral sclerosis; human; patient care; male; living will; female; sedation; marriage; motoneuron; personal autonomy;