Home care organization impacts patient management and survival in ALS.

Objective: Progression of amyotrophic lateral sclerosis (ALS) depends on several factors linked to the disease. However, both the patient's living place and care organization role need to be evaluated.

Methods: We analysed the effect on survival of factors linked to ALS or the socio-geographical context in a prospective cohort of 203 patients followed between 2003 and 2011.

Results: Patients were 97 females and 106 males with a mean age of 65.5 years. Survival was longer in younger patients, in case of upper limb involvement, longer time to diagnosis, and initially higher forced vital capacity. Non-invasive positive pressure ventilation (NIPPV) and percutaneous gastrostomy (PEG) failed to demonstrate benefit. Patients who lived at home had longer survival. The nature of non-medical organization at home statistically influenced survival, which was longer with an organized network than with an unorganized one and shorter in absence of non-medical organization. In patients with indication of PEG and NIPPV, the proposition was statistically different according to the care givers.

Conclusions: Besides the natural history of ALS, survival depended on home organization and the presence or the nature of a home-care system. Home organization was an important factor of decision for NIPPV and PEG proposals.