Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis
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 c...
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| Format: | Article |
| Language: | English |
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Wiley
2015-01-01
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| Series: | Behavioural Neurology |
| Online Access: | http://dx.doi.org/10.1155/2015/648415 |
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| author | E. Bayen C. Papeix P. Pradat-Diehl C. Lubetzki M. E. Joël |
| author_facet | E. Bayen C. Papeix P. Pradat-Diehl C. Lubetzki M. E. Joël |
| author_sort | E. Bayen |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-6e26133934504ea9855f2b50bf283fc6 |
| institution | Kabale University |
| issn | 0953-4180 1875-8584 |
| language | English |
| publishDate | 2015-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Behavioural Neurology |
| spelling | doaj-art-6e26133934504ea9855f2b50bf283fc62025-02-03T05:51:48ZengWileyBehavioural Neurology0953-41801875-85842015-01-01201510.1155/2015/648415648415Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple SclerosisE. Bayen0C. Papeix1P. Pradat-Diehl2C. Lubetzki3M. E. Joël4Department of Neuro-Rehabilitation, Pitié-Salpêtrière Hospital, 75013 Paris, FranceDepartment of Neurology, Pitié-Salpêtrière Hospital, 75013 Paris, FranceDepartment of Neuro-Rehabilitation, Pitié-Salpêtrière Hospital, 75013 Paris, FranceDepartment of Neurology, Pitié-Salpêtrière Hospital, 75013 Paris, FranceHealth Economics Department, LEDa-LEGOS, PSL, Paris-Dauphine University, 75016 Paris, FranceBackground. 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.http://dx.doi.org/10.1155/2015/648415 |
| spellingShingle | E. Bayen C. Papeix P. Pradat-Diehl C. Lubetzki M. E. Joël Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis Behavioural Neurology |
| title | Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis |
| title_full | Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis |
| title_fullStr | Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis |
| title_full_unstemmed | Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis |
| title_short | Patterns of Objective and Subjective Burden of Informal Caregivers in Multiple Sclerosis |
| title_sort | patterns of objective and subjective burden of informal caregivers in multiple sclerosis |
| url | http://dx.doi.org/10.1155/2015/648415 |
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