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

Abstract

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 (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 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.

The economic burden of caregiving in epilepsy: An estimate based on a survey of US caregivers

“…The Twelve‐Item Short Form Survey Instrument scores were consistent with those for caregivers of PWEs observed in prior research and for caregivers of patients with traumatic brain injury, multiple sclerosis, and Parkinson disease . ZBI scores were in the mild‐to‐moderate burden range, consistent with the range seen in those conditions .…”

Measuring carer burden in informal carers of patients with long-term conditions

“…Bayen et al (2015) found that 54% of carers reported perceived burden and the scores were associated with the disability progression and limited cognitive function, which contrasts with the earlier findings of Akkuş and Akdemi (2011). Burden scores in MS were high from the onset of the condition which can be due to the unpredictable nature of the disease (Bayen et al, 2015). The ZBI scores reported by Bayen et al, (2015) varied greatly from other studies.…”

“…Burden scores in MS were high from the onset of the condition which can be due to the unpredictable nature of the disease (Bayen et al, 2015). The ZBI scores reported by Bayen et al, (2015) varied greatly from other studies. The authors suggest that differences might arise from different ways of application of the instrument (questionnaires or interviews) (Rivera-Navarro et al, 2009).…”

“…The majority of carers are female (Whittingham et al, 2013;Bayen et al, 2015), but this does not always apply to MS as the disorder affect three times as many women as men (Forbes et al, 2007). The burden levels in MS carers in the studies that used ZBI were higher than in other conditions.…”

“…As a result, some researchers create their own cut-off points, leading to inconsistencies and misleading conclusions. Some consider diseasespecific instruments more effective (Spliethoff-Kamminga et al, 2003) as they consider objective burden to vary between long term conditions (Bayen et al, 2015).…”