Research program

4 research focus centered around the understanding of inequalities to improve the lives of patients :

  • Disability, social inclusion & professional integration
  • Impact of MS on family life
  • Risk factors related to comorbidities
  • AI and health data mining

The 4 research focus perfectly match with the EHESP proposal which aims to explore several dimensions described in the following mental map (text in french) :

  1. Access to care and support

    Several questions arise about the care of people with MS, directly concerning MS, but also concerning their general health, such as :

    • What health behaviors are adopted by people with MS?
    • What is their health status apart from MS (comorbidities)?
    • What place for prevention?
    • Are there geographic variations in cares?
    • What organization and access to CRC-MS (expert centres, 1 university hospital per region)?
    • etc.

    These questions aim to identify any social, territorial or gender inequalities that could lead to a loss of opportunity for some patients, even though access to care in France is not subject to resource conditions. Also, in the analyzes that are carried out, in particular on health insurance data, the search for individual determinants but also linked to the territories (offer of care, socio-economic level, urban/rural, accessibility, etc.) will be an important part.

  2. Work

    Professional integration and job retention are important elements in a chronic disease such as MS, in particular because of its age of onset around 30 years on average. A study that we have in progress shows a collapse in the employment rate after admission to ALD SEP (around 50% in the first 10 years).

    The following questions may be considered in the research work of the chair:

    • What frequency of work stoppages?
    • What is the impact of therapeutic care on job retention and work stoppages?
    • What access to the disability pension?
    • What strategies can be put in place to help maintain employment?
    • How to improve the accessibility of information on administrative procedures?
    • etc.

    It is clear that for some of those questions, quantitative datas are useful but must necessarily be qualified by a qualitative approach with the people concerned: patients and employers in particular. Here again, the search for inequalities involves in particular the identification of individual and collective determinants.

  3. Daily life

    This section aims to document the consequences of MS on the daily life of people and those around them to see what actions could be taken to remedy them or reduce potential inequalities. The questions include :

    • What level of quality of life in people with MS and what determinants?
    • What experience of disability (visible and invisible)?
    • What support device, what patient care ?
    • The specific case of pediatric forms of MS
    • What about caregivers?
    • etc.

  4. Family

    In connection with the previous section, the questions are about the family life, such as :

    • What pregnancy follow-up for women with MS?
    • What access to Medically Assisted Procreation?
    • What impact does the disease have on family life?
    • What role for caregivers (spouse, children, parents)?
    • etc.