Multiple Sclerosis
Conditions
Keywords
patients experience, caregivers experience, quality of care, quality of life
Brief 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.
Detailed description
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).
Interventions
OTHERto 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)
Sponsors
Rennes University Hospital
Ministry of Health, France
Nantes University Hospital
University Hospital, Angers
Central Hospital, Nancy, France
University Hospital, Strasbourg
University Hospital, Marseille
University Hospital, Clermont-Ferrand
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
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
* Caregivers and patients incapable of understanding the proposed procedure and the questionnaire
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Validation phase of the questionnaire | 2 years | The validation phase of V2 comprises the analysis of the construct's reliability, exploratory and confirmatory stages of tool structuration in dimensions, and the reproducibility of the findings generated. It relies on the recruitment of caregivers who did not participate in the preceding steps. To verify the stability of tool responses, another test round by 20% of the responders will be conducted 15 +/- 5 days after the first evaluation. Finally, an analysis of sensitivity to change (e.g. initiation of a new treatment, transition to a progressive form; changes in disease management; changes in caregiver's situation) will be conducted. |
Countries
France
Contacts
PRINCIPAL_INVESTIGATORDavid Veillard
Rennes University Hospital
Outcome results
None listed