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Impact of Multiple Sclerosis From the Viewpoint of the Patients and Their Caregivers
Sponsor: Rennes University Hospital
Summary
Patients with chronic illness and their relatives have exhaustive and specific experience of healthcare and the health service.These unique experiences must be taken into account for quality of care management assessment. MS affects young patients whose illness and level of disability will worsen throughout their lives. Half the patients living with MS require a natural (non professional) caregiver's support and this level of investment increases with the degree of disability. No dedicated tools for patients living with MS and their caregivers are currently available to assess their experience of the quality of care management.
Official title: Impact of Multiple Sclerosis From the Viewpoint of the Patients and Their Natural Caregivers : Exploring Their Expectations Concerning the Quality of Carel Management and Their Quality Of Life
Key Details
Gender
All
Age Range
18 Years - Any
Study Type
OBSERVATIONAL
Enrollment
1080
Start Date
2015-01-15
Completion Date
2023-06-13
Last Updated
2026-06-12
Healthy Volunteers
No
Conditions
Interventions
to develop standardized questionnaires
The aim of our project is to develop, from the patients living with MS and their natural caregivers' point of view, standardized questionnaires evaluating their experience concerning the global quality of care management, in accordance with psychometric standards. The questionnaires will be developed in two phases : item generation (Phase 1) and validation (Phase 2)
Locations (1)
Rennes University Hospital
Rennes, France