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EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a

Background. The perception of the role of caregivers for people with multiple sclerosis (MS) is important but poorly studied, particularly in patients with low levels of disability. Objectives. To describe the perceptions of the role of caregivers from the perspective of the caregiver, the patient,...

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Autores principales: Donzé, Cécile, Lenne, Bruno, Jean Deleglise, Anne-Sophie, Kempf, Christian, Bellili, Yasmine, Hautecoeur, Patrick
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Hindawi Publishing Corporation 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4983666/
https://www.ncbi.nlm.nih.gov/pubmed/27563466
http://dx.doi.org/10.1155/2016/4986073
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author Donzé, Cécile
Lenne, Bruno
Jean Deleglise, Anne-Sophie
Kempf, Christian
Bellili, Yasmine
Hautecoeur, Patrick
author_facet Donzé, Cécile
Lenne, Bruno
Jean Deleglise, Anne-Sophie
Kempf, Christian
Bellili, Yasmine
Hautecoeur, Patrick
author_sort Donzé, Cécile
collection PubMed
description Background. The perception of the role of caregivers for people with multiple sclerosis (MS) is important but poorly studied, particularly in patients with low levels of disability. Objectives. To describe the perceptions of the role of caregivers from the perspective of the caregiver, the patient, and neurologists. Methods. This observational study was conducted in France on patients with relapsing remitting MS treated with subcutaneous (SC) interferon-β-1a (IFN-β-1a) for more than 24 months. Results. Caregiver, patients, and neurologists all considered providing moral support and fighting against the disease as the most important role of the care provider. Moral support was considered significantly more important by caregivers than the patients and neurologists (p = 0.002) and caregivers considered their role in helping patients to fight disease more important than did the neurologists (p = 0.006). Knowledge of disease and available treatments were less important among support providers than patients (p = 0.007 and p = 0.001). Conclusion. There are many unmet needs in the perception of the role of caregivers for people with MS which need to be addressed to deliver the most effective care package for patients and to support the needs of the support provider.
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spelling pubmed-49836662016-08-25 EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a Donzé, Cécile Lenne, Bruno Jean Deleglise, Anne-Sophie Kempf, Christian Bellili, Yasmine Hautecoeur, Patrick Mult Scler Int Research Article Background. The perception of the role of caregivers for people with multiple sclerosis (MS) is important but poorly studied, particularly in patients with low levels of disability. Objectives. To describe the perceptions of the role of caregivers from the perspective of the caregiver, the patient, and neurologists. Methods. This observational study was conducted in France on patients with relapsing remitting MS treated with subcutaneous (SC) interferon-β-1a (IFN-β-1a) for more than 24 months. Results. Caregiver, patients, and neurologists all considered providing moral support and fighting against the disease as the most important role of the care provider. Moral support was considered significantly more important by caregivers than the patients and neurologists (p = 0.002) and caregivers considered their role in helping patients to fight disease more important than did the neurologists (p = 0.006). Knowledge of disease and available treatments were less important among support providers than patients (p = 0.007 and p = 0.001). Conclusion. There are many unmet needs in the perception of the role of caregivers for people with MS which need to be addressed to deliver the most effective care package for patients and to support the needs of the support provider. Hindawi Publishing Corporation 2016 2016-08-01 /pmc/articles/PMC4983666/ /pubmed/27563466 http://dx.doi.org/10.1155/2016/4986073 Text en Copyright © 2016 Cécile Donzé et al. https://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Donzé, Cécile
Lenne, Bruno
Jean Deleglise, Anne-Sophie
Kempf, Christian
Bellili, Yasmine
Hautecoeur, Patrick
EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a
title EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a
title_full EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a
title_fullStr EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a
title_full_unstemmed EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a
title_short EVASEP: A Noninterventional Study Describing the Perception of Neurologists, Patients, and Caregivers on Caregivers' Role in the Support of Patients Suffering from Multiple Sclerosis Treated with Subcutaneous Interferon Beta 1a
title_sort evasep: a noninterventional study describing the perception of neurologists, patients, and caregivers on caregivers' role in the support of patients suffering from multiple sclerosis treated with subcutaneous interferon beta 1a
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4983666/
https://www.ncbi.nlm.nih.gov/pubmed/27563466
http://dx.doi.org/10.1155/2016/4986073
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