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.
abstract: 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.
authors: Service de Médecine Physique et Réadaptation Fonctionnelle, Groupe Hospitalier de l'Institut Catholique de Lille, boulevard de Belfort, BP 387, 59020 Lille Cedex, France.
authors: Cécile
authors: C
authors: Donzé
authors: Service de Neurologie, Groupe Hospitalier de l'Institut Catholique de Lille, boulevard de Belfort, BP 387, 59020 Lille Cedex, France.
authors: Bruno
authors: B
authors: Lenne
authors: Merck Serono, 37 rue Saint Romain, 69379 Lyon Cedex 08, France.
authors: Anne-Sophie
authors: AS
authors: Jean Deleglise
authors: CKConsulting, 6 rue Birkenfels, 67530 Ottrott, France.
authors: Christian
authors: 0000-0003-0637-9050
authors: C
authors: Kempf
authors: Merck Serono, 37 rue Saint Romain, 69379 Lyon Cedex 08, France.
authors: Yasmine
authors: Y
authors: Bellili
authors: Service de Neurologie, Groupe Hospitalier de l'Institut Catholique de Lille, boulevard de Belfort, BP 387, 59020 Lille Cedex, France.
authors: Patrick
authors: P
authors: Hautecoeur