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Informal care in multiple sclerosis

Author

Listed:
  • Eleonore Bayen

    (UPMC - Faculté de médecine Pitié Salpétrière - UPMC - Université Pierre et Marie Curie - Paris 6 - CHU Pitié-Salpêtrière [AP-HP] - AP-HP - Assistance publique - Hôpitaux de Paris (AP-HP) - SU - Sorbonne Université)

  • C Papeix

    (CHU Pitié-Salpêtrière [AP-HP] - AP-HP - Assistance publique - Hôpitaux de Paris (AP-HP) - SU - Sorbonne Université, CRMBM - Centre de résonance magnétique biologique et médicale - AMU - Aix Marseille Université - APHM - Assistance Publique - Hôpitaux de Marseille - CNRS - Centre National de la Recherche Scientifique)

  • P Pradat-Diehl

    (CHU Pitié-Salpêtrière [AP-HP] - AP-HP - Assistance publique - Hôpitaux de Paris (AP-HP) - SU - Sorbonne Université, CHU Pitié-Salpêtrière [AP-HP] - AP-HP - Assistance publique - Hôpitaux de Paris (AP-HP) - SU - Sorbonne Université, Physiologie et physiopathologie de la motricité chez l'homme - UPMC - Université Pierre et Marie Curie - Paris 6 - IFR70 - INSERM - Institut National de la Santé et de la Recherche Médicale, LIB - Laboratoire d'Imagerie Biomédicale [Paris] - UPMC - Université Pierre et Marie Curie - Paris 6 - INSERM - Institut National de la Santé et de la Recherche Médicale - CNRS - Centre National de la Recherche Scientifique)

  • C Lubetzki

    (CHU Pitié-Salpêtrière [AP-HP] - AP-HP - Assistance publique - Hôpitaux de Paris (AP-HP) - SU - Sorbonne Université, Biologie des Interactions Neurones / Glie - UPMC - Université Pierre et Marie Curie - Paris 6 - INSERM - Institut National de la Santé et de la Recherche Médicale - INSERM - Institut National de la Santé et de la Recherche Médicale, CRICM - Centre de Recherche de l'Institut du Cerveau et de la Moelle épinière - UPMC - Université Pierre et Marie Curie - Paris 6 - INSERM - Institut National de la Santé et de la Recherche Médicale - CNRS - Centre National de la Recherche Scientifique, ICM - Institut du Cerveau et de la Moëlle Epinière = Brain and Spine Institute - UPMC - Université Pierre et Marie Curie - Paris 6 - INSERM - Institut National de la Santé et de la Recherche Médicale - CHU Pitié-Salpêtrière [AP-HP] - AP-HP - Assistance publique - Hôpitaux de Paris (AP-HP) - SU - Sorbonne Université - CNRS - Centre National de la Recherche Scientifique)

  • Marie Eve Joel

    (LEDa - Laboratoire d'Economie de Dauphine - Université Paris Dauphine-PSL - PSL - Université Paris Sciences et Lettres)

Abstract

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.

Suggested Citation

  • Eleonore Bayen & C Papeix & P Pradat-Diehl & C Lubetzki & Marie Eve Joel, 2015. "Informal care in multiple sclerosis," Post-Print hal-01397136, HAL.
    • Handle: RePEc:hal:journl:hal-01397136
    DOI: 10.1016/j.rehab.2015.07.255
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