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
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
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.
Although consideration of the patients' point of view to evaluate the effectiveness and quality of therapeutic strategies and, more widely, heathcare interventions have been imposed for the last 20 years in our healthcare systems, the data on caregivers' viewpoints are more recent. Authors concurred that assessing patients and caregivers'needs and experiences is a more appropriate source of information to identify their expectations concerning the quality of the healthcare system rather than the concept of "patient satisfaction". Their expectations regarding the global quality of care management is not documented in France, notably because of the lack of adapted tools.
The original tools validated will complete the palette of those that we are developing (quality indicators) to evaluate the quality of care of MS patients according to different dedicated organizations (formal networks or not, focused on the patients or professionals).
Inclusion Criteria:
For the patients the criteria were :
to be 1) aged 18 years or older, 2) diagnosed with any form of definitivee MS according to the McDonald criteria, excluding clinically isolated syndrome, and 3) fluent in the French language.
For their caregivers, the criteria were to be 1) aged 18 years or older, 2) designated by the patient as a natural caregiver (i.e. noninstitutional relative/person most closely involved in the decisions linked to the disease), 3) fluent in the French language, and 4) free from MS. All patients and caregivers gave their written informed consent.
Exclusion Criteria: