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Behavioural Neurology
Volume 2015, Article ID 648415, 10 pages
Research Article

Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis

1Department of Neuro-Rehabilitation, Pitié-Salpêtrière Hospital, 75013 Paris, France
2Health Economics Department, LEDa-LEGOS, PSL, Paris-Dauphine University, 75016 Paris, France
3Department of Neurology, Pitié-Salpêtrière Hospital, 75013 Paris, France
4ER6 Unit, Pierre and Marie Curie University, Pitié-Salpêtrière Hospital, 75013 Paris, France
5CRICM, Inserm UMR S975, Pierre and Marie Curie University, Pitié-Salpêtrière Hospital, 75013 Paris, France

Received 19 February 2015; Accepted 30 April 2015

Academic Editor: Antonio Orlacchio

Copyright © 2015 E. Bayen et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.


Background. Home care for patients with Multiple Sclerosis (MS) relies largely on informal caregivers (ICs). Methods. We assessed ICs objective burden (Resource Utilization in Dementia measuring informal care time (ICT)) and ICs subjective burden (Zarit Burden Inventory (ZBI)). Results. ICs () were spouses (70%), mean age 52 years, assisting disabled patients with a mean EDSS (Expanded Disability Status Scale) of 5.5, with executive dysfunction (mean DEX (Dysexecutive questionnaire) 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 coresidency 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 dysexecutive function and for patients classified as fast progressors according to the Multiple Sclerosis Severity Score. Conclusion. Evaluation of MS disability course and IC’s personal situation is crucial to understand the burden process and to implement adequate interventions in MS.