Informal care in multiple sclerosis
Bayen, Eléonore; Papeix, C; Pradat-Diehl, P; Lubetzki, C; Joël, Marie-Eve (2015), Informal care in multiple sclerosis, Annals of Physical and Rehabilitation Medicine, 58, Supplement 1, p. 105. 10.1016/j.rehab.2015.07.255
TypeArticle accepté pour publication ou publié
Journal nameAnnals of Physical and Rehabilitation Medicine
MetadataShow full item record
UPMC - Faculté de médecine Pitié Salpétrière
Physiologie et physiopathologie de la motricité chez l'homme
Laboratoire d'Imagerie Biomédicale [Paris] [LIB]
Biologie des Interactions Neurones / Glie
Centre de Recherche de l'Institut du Cerveau et de la Moelle épinière [CRICM]
Institut du Cerveau et de la Moëlle Epinière = Brain and Spine Institute [ICM]
Laboratoire d'Economie de Dauphine [LEDa]
Abstract (EN)BackgroundHome care for patients with multiple sclerosis relies largely on informal caregivers (ICs).MethodsWe assessed ICs objective burden (Informal Care Time, ICT) and ICs subjective burden (Zarit Burden Inventory, ZBI) and their explanatory factors.ResultsICs (n = 99) were spouses (70%), mean age 52 years, assisting disabled patients with a mean Expanded Disability Status Scale (EDSS) of 5.5, with executive dysfunction (mean DysExecutive Questionnaire [DEX] of 25) and a duration of MS ranging from 1 to 44 years. Objective burden was high (mean ICT = 6.5 hours/day), mostly consisting of supervision time. Subjective burden was moderate (mean ZBI = 27.3). Multivariate analyses showed that both burdens were positively correlated with higher levels of EDSS and DEX, whereas co-residency and IC's female gender correlated with objective burden only and IC's poor mental health status with subjective burden only. When considering MS aggressiveness, it appeared that both burdens were not correlated with a higher duration of MS but rather increased for patients with severe and early cognitive dysfunction and for patients classified as fast progressors according to the Multiple Sclerosis Severity Scale.ConclusionMS disability course and IC's personal situation must be evaluated to understand the burden process and to implement adequate interventions in MS.
Subjects / KeywordsMultiple sclerosis; Informal caregiver; Burden; Multiple Sclerosis Severity Scale
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