Impact of Multiple Sclerosis From the Viewpoint of the Caregivers

Summary

Half the MS patients require a natural (non professional) caregiver's support for daily living activities and this level of investment increases with the degree of disability.

The caregiver's role is an essential key factor in the "therapeutic alliance" between the patient and heath professionals. The impact on the natural caregivers' Quality Of Life (QOL) and their expectations for the global quality of management are not documented, notably because of the lack of adapted tools.

The aim of the investigators' project is to develop, from the caregivers' point of view, a standardized questionnaire evaluating 1) their QOL as related to the disease of the assisted and 2) their expectations concerning the global quality of professional management (care, coordination, information...).

1\) their quality of life (QOL) as related to the disease of the assisted and 2) their expectations concerning the global quality of professional management (care, coordination, information...).

The original tool validated will complete the palette of those that the investigators are developing to evaluate the quality of care of MS patients according to different dedicated organizations (formal networks or not, focused on the patients or professionals).

Conditions

• Multiple Sclerosis

Interventions

OTHER

to develop a standardized questionnaire

to develop, from the caregivers' point of view, a standardized questionnaire evaluating 1) their quality of life (QOL) as related to the disease of the assisted and 2) their expectations concerning the global quality of professional management (care, coordination, information...). The development of this standardized tool will also : * identify the specific support needs of the caregivers * study the links between the quality of care as perceived by the professionals, patients and caregivers * identify the characteristics of the caregivers (status) and patients (disease type, disease-modifying drug (DMD) initiation, disease duration) associated with questionnaire results.

Sponsors & Collaborators

• Ministry of Health, France

  collaborator OTHER_GOV

• Nantes University Hospital

  collaborator OTHER

• University Hospital, Angers

  collaborator OTHER_GOV

• Central Hospital, Nancy, France

  collaborator OTHER

• University Hospital, Strasbourg

  collaborator OTHER

• University Hospital, Marseille

  collaborator OTHER

• University Hospital, Clermont-Ferrand

  collaborator OTHER

• Rennes University Hospital

  lead OTHER

Principal Investigators

• David Veillard · Rennes University Hospital

Eligibility

Min Age

18 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2015-03-31

Primary Completion

2015-12-31

Completion

2017-06-30