Informal care in multiple sclerosis
Dr Eléonore BAYENa, Dr Caroline PAPEIXb, Prof Pascale PRADAT-DIEHLc, Prof Catherine LUBETZKIb, Prof Marie-Eve JOËLd
a Antenne UEROS-UGECAM Ile de France - Service de Médecine Physique et de Réadaptation - HU Pitié-Salpêtrière, b Service Fédération des Maladies Neurologiques - HU Pitié-Salpêtrière, c Service de Médecine Physique et de Réadaptation - HU Pitié-Salpêtrière, d Laboratoire d'Economie de Dauphine (LEDa-LEGOS) - Université Paris-Dauphine
Background: Home care for patients with Multiple Sclerosis (MS) relies largely on Informal Caregivers (ICs).
Methods: We assessed ICs objective burden (Informal Care Time, ICT) and ICs subjective burden (Zarit Burden Inventory, ZBI) and their explanatory factors.
Results: ICs (N=99) 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 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.
Conclusion: MS disability course and IC’s personal situation must be evaluated to understand the burden process and to implement adequate interventions in MS.
Keywords : multiple sclerosis, informal caregiver, burden, Multiple Sclerosis Severity Scale