Coordinated care affects hospitalization and prognosis in amyotrophic lateral sclerosis: a cohort study

BACKGROUND: To determine whether an integrated approach to coordination of care influences hospitalization and clinical outcomes in a chronic neurological disease, amyotrophic lateral sclerosis. METHODS: We followed up 2452 patients with probable or definite amyotrophic lateral sclerosis from 2000 to 2012. Two cohorts were compared before and after the creation of a community care network for this disease in Ile de France in 2006. During these two periods, the medical and paramedical care teams and formal standards of care were identical; the only difference was the coordination by the network. To investigate hospital and emergency department use, we used number of patients, number of stays, and number of days. For clinical outcomes, we used slopes of functional deterioration, and Kaplan–Meier and Cox models for survival. RESULTS: All hospitalization variables decreased after the creation of the network, which was not explained by admissions elsewhere. The slope of functional deterioration was significantly different before (1.03 ± 1.57 points/month) and after (0.79 ± 0.80 points/month; p = 0.002) creation of the network. Patients included in the network had a median survival time of 13.2 months more (log rank test; p < 0.001). In the Cox model, the network intervention was associated with a 45% decrease in relative risk of death during the period of the study (p < 0.001). CONCLUSIONS: Network care was associated with fewer hospital admissions, reduced functional deterioration and later mortality in ALS. These results suggest that proactive coordination between carers in chronic and complex diseases could have a positive impact on hospitalization and the clinical course of the disease. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-015-0810-7) contains supplementary material, which is available to authorized users.