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

Abstract

BackgroundTo determine whether an integrated approach to coordination of care influences hospitalization and clinical outcomes in a chronic neurological disease, amyotrophic lateral sclerosis.MethodsWe 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.ResultsAll 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).ConclusionsNetwork 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 materialThe online version of this article (doi:10.1186/s12913-015-0810-7) contains supplementary material, which is available to authorized users.

Hospitalizations due to respiratory failure in patients with Amyotrophic Lateral Sclerosis and their impact on survival: a population-based cohort study

“…The median duration of hospital stay was 8 days, in line with the results of a prior Italian study (mean 10.3 days) [26] but longer than in a French study (mean 3.3 days) [13]. In the USA, the mean length of stay varied from 8.4 days [15] to 5 days [14].…”

“…The proportion of patients hospitalized decreased from 80 % in 2000 to less than 40 % in 2012 [13]. Evaluating hospital admissions with a diagnostic code for ALS in large US administrative databases, two studies reported that emergency admissions were common while only about 20 % were elective [14, 15].…”

“…Patients followed up by multidisciplinary centers had lower in-hospital mortality and shorter length of stay [10]. Community care management and coordination led to a decrease in overall and emergency non-planned hospitalizations [13]. Telemonitoring of home NIV reduced hospital admissions and emergency room visits [17].…”

Reduced survival in patients with ALS with upper airway obstructive events on non-invasive ventilation

“…The patients and their caregivers all received logistical and psychological support from the Paris ALS Network care. 16…”

Pain at end-of-life among patients with amyotrophic lateral sclerosis receiving noninvasive ventilation

“…Network care is associated with reduced hospital administration, reduced deterioration of function, and delayed mortality in patients with ALS. 18 Moreover, an integrated approach that coordinates care between the hospital and other care settings in community can influence the palliation of dying and the quality of death of patients with ALS.…”