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. 2015:2015:648415.
doi: 10.1155/2015/648415. Epub 2015 May 20.

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

E Bayen  1 , C Papeix  2 , P Pradat-Diehl  3 , C Lubetzki  4 , M E Joël  5
Affiliations

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

E Bayen et al. Behav Neurol. 2015.

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.

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Figures

Figure 1
Figure 1
Informal caregiver objective burden (informal care time (ICT)): (a) scatterplots of the correlation between EDSS score and ICT. White dots signify that patient's Dysexecutive questionnaire score is over 75th percentile (otherwise dark dots), (b) ICT-sub activities and formal care time (FCT) as a function of EDSS. ADL = Activities of Daily Living; IADL = Instrumental Activities of Daily Living; ST = Supervision Time, and (c) scatterplots of the correlation between MS duration and ICT. White dots specify fast progressors (i.e., patients with a rapid disability course identified in the Multiple Sclerosis Severity Score [9, 13] table over the 8th decile) and dark dots specify otherwise.
Figure 2
Figure 2
Informal caregiver subjective burden (Zarit Burden Inventory (ZBI)): (a) scatterplots of the correlation between EDSS scores and ZBI scores. White dots signify that patient's Dysexecutive questionnaire score is over 75th percentile (otherwise dark dots); circle represents patients with EDSS score under 4 and Dysexecutive questionnaire score over the 85th percentile, (b) scatterplots of the correlation between Dysexecutive questionnaire scores and ZBI scores, and (c) scatterplots of the correlation between MS duration and ZBI. White dots specify fast progressors (i.e., patients with a rapid disability course identified in the Multiple Sclerosis Severity Score [9, 13] table over the 8th decile) and dark dots specify otherwise.
See this image and copyright information in PMC

References

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