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Informal care in multiple sclerosis

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Date
2015
Dewey
Economie sociale
Sujet
Multiple sclerosis; Informal caregiver; Burden; Multiple Sclerosis Severity Scale
JEL code
I.I1.I11; I.I1.I12
Journal issue
Annals of Physical and Rehabilitation Medicine
Volume
58
Number
Supplement 1
Publication date
2015
Article pages
105
Publisher
Elsevier
DOI
http://dx.doi.org/10.1016/j.rehab.2015.07.255
URI
https://basepub.dauphine.fr/handle/123456789/15954
Collections
  • LEDa : Publications
Metadata
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Author
Bayen, Eléonore
35737 UPMC - Faculté de médecine Pitié Salpétrière
Papeix, C
5370 Département de Neurologie [Paris]
Pradat-Diehl, P
status unknown
Lubetzki, C
5370 Département de Neurologie [Paris]
14480 Biologie des Interactions Neurones / Glie
81470 Centre de Recherche de l'Institut du Cerveau et de la Moelle épinière [CRICM]
246044 Institut du Cerveau et de la Moëlle Epinière = Brain and Spine Institute [ICM]
Joël, Marie-Eve
163511 Laboratoire d'Economie de Dauphine [LEDa]
Type
Article accepté pour publication ou publié
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.

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