Home care organization impacts patient management and survival in ALS

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.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.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.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.