Ph. D. Project
Title:
French adaptation of a scale assessing work difficulties of patients with Multiple Sclerosis and proposal for
individualized remediation at a distance from the cognitive disorders that can induce them.
Dates:
2021/12/01 - 2024/11/30
Student:
Supervisor(s):
Description:
1-Context
Multiple Sclerosis (MS) is a neurological pathology that affects more than 110,000 people in France. Numerous
studies have focused on the impact of this disease on the work abilities of patients (Kobelt et al, 2006, 2017,
Dorstyn et al, 2019, Gerhard et al, 2020). A questionnaire to assess work difficulties has been specifically
developed for MS patients and validated in English: the Multiple Sclerosis Work Difficulties Questionnaire
MSWDQ (Honan et al, 2012). There is a short version of this questionnaire that facilitates its use in routine
clinical settings (Honan et al, 2014), the MSWDQ-23. It has been translated and validated in Spanish (Martinez-
Ginés et al, 2018), but does not currently exist in French.
The main objective of this thesis project is to validate the French version of this questionnaire through a
multicenter study (WORKSEP).
The French validation of this questionnaire is relevant because it has been shown that patients' quality of life
decreases with decreasing work abilities and loss of employment (Aronson, 1997, Miller and Dishon, 2006,
Ruet et al, 2013, Jones et al, 2016), which can go as far as a perception of stigmatization for patients (Maurino
et al, 2020).
And no studies have sought to test the hypothesis that cognitive remediation might reduce difficulties at work.
Insofar as these are professionally active patients, the proposed remediation will be carried out at a distance in
the form of teleconsultations and computerized tools. The secondary objective of this study will therefore be
to aim for the most optimal cognitive improvement possible, which, as we hypothesize, will reduce the
patients' work difficulties.
2- Method
The main study of this project includes the filling in of a demographic, professional and medical information
collection form and the completion of three questionnaires: the MSWDQ questionnaire which we adapted
into French through a strict double-blind translation methodology following the Cosmin protocol (Mokkink, et
al, 2006), the DEX which assesses the complaint of executive dysfunction in daily life (Alain et al, 2004)
including a version for the patient and one for his or her companion, and the SF36 allowing to assess the
patients' quality of life (Leplège et al, 2001). Statistically, it was determined that it was necessary to include 206
patients in order to obtain significant results.
The second study was conducted in the Nice and Nancy centers only. It includes for 70 patients, in addition to
the questionnaires of the main study, the completion of three additional questionnaires and an exhaustive
neuropsychological assessment.
The neuropsychological assessment consists of the Bicams battery, which includes: the SDMT assessing
processing speed, the CVLT assessing verbal memory, and the BVMTR assessing visual memory (Corfield and
Langdon, 2018, Deloire et al, 2018). To this short battery were added the following tests assessing: Verbal
(WAIS IV digit place span) and visual (MEM III) short-term memory, verbal (WAIS IV digit reverse span, digit
memory and digit letter sequence items) and visual (MEM III reverse span) working memory, attentional
abilities (CSCT for processing speed, TMT A and B for selective and divided attention, the Pasat for sustained
attention), and language (DO80 verbal fluencies and naming).
The third phase of this thesis project will consist in proposing to the patients of the second study with
cognitive disorders a personalized treatment. The sessions will be carried out remotely according to the
specificity of the disorders of each patient and their availability. Different supports will be used, digital tools
such as training software developed by the University of California San Francisco
(https://neuroscape.ucsf.edu/) and paper and pencil supports such as managmind and procog-sep developed
by Hélène Brissart. Teleconsultation sessions will also be offered to supervise the completion of the exercises
and to provide psychoeducational advice. After three months of care, they will go through the complete
assessment and questionnaires again. Statistical analyses using SPSS software will aim to evaluate whether the
improvement of cognitive disorders reduces the patients' work difficulties.
3- Feasibility
The WORKSEP project obtained the approval of the Committee for the Protection of Individuals in February
2021. Inclusion began in May 2021 in Nice and in June in Nancy. The main study is taking place in 17 university
hospitals in France under the auspices of the French-speaking Multiple Sclerosis Society (SFSEP). Heloise Joly is
the principal investigator of this project and Hélène Brissart is the co-investigator. We have obtained funding
for this project from the Foundation for Research in MS (ARSEP) in the amount of 48100 euros.
4- Relevance
The main study of WORKSEP will allow us to provide research and clinics with a short and easy-to-use tool to
evaluate the work difficulties of MS patients, knowing that none exists to date in French. This will make it
possible to propose, if necessary, appropriate treatment to alleviate these difficulties and to promote job
retention. The ancillary study will make it possible to evaluate the impact of cognitive and thymic disorders
(anxiety-depression), as well as fatigue on work difficulties. The remediation part will be, to our knowledge, the
first study aiming at proposing a treatment to mitigate the cognitive disorders that can induce work difficulties
in MS patients. Finally, we will use an innovative personalized and remote method to optimize the
improvement of each patient.
Multiple Sclerosis (MS) is a neurological pathology that affects more than 110,000 people in France. Numerous
studies have focused on the impact of this disease on the work abilities of patients (Kobelt et al, 2006, 2017,
Dorstyn et al, 2019, Gerhard et al, 2020). A questionnaire to assess work difficulties has been specifically
developed for MS patients and validated in English: the Multiple Sclerosis Work Difficulties Questionnaire
MSWDQ (Honan et al, 2012). There is a short version of this questionnaire that facilitates its use in routine
clinical settings (Honan et al, 2014), the MSWDQ-23. It has been translated and validated in Spanish (Martinez-
Ginés et al, 2018), but does not currently exist in French.
The main objective of this thesis project is to validate the French version of this questionnaire through a
multicenter study (WORKSEP).
The French validation of this questionnaire is relevant because it has been shown that patients' quality of life
decreases with decreasing work abilities and loss of employment (Aronson, 1997, Miller and Dishon, 2006,
Ruet et al, 2013, Jones et al, 2016), which can go as far as a perception of stigmatization for patients (Maurino
et al, 2020).
And no studies have sought to test the hypothesis that cognitive remediation might reduce difficulties at work.
Insofar as these are professionally active patients, the proposed remediation will be carried out at a distance in
the form of teleconsultations and computerized tools. The secondary objective of this study will therefore be
to aim for the most optimal cognitive improvement possible, which, as we hypothesize, will reduce the
patients' work difficulties.
2- Method
The main study of this project includes the filling in of a demographic, professional and medical information
collection form and the completion of three questionnaires: the MSWDQ questionnaire which we adapted
into French through a strict double-blind translation methodology following the Cosmin protocol (Mokkink, et
al, 2006), the DEX which assesses the complaint of executive dysfunction in daily life (Alain et al, 2004)
including a version for the patient and one for his or her companion, and the SF36 allowing to assess the
patients' quality of life (Leplège et al, 2001). Statistically, it was determined that it was necessary to include 206
patients in order to obtain significant results.
The second study was conducted in the Nice and Nancy centers only. It includes for 70 patients, in addition to
the questionnaires of the main study, the completion of three additional questionnaires and an exhaustive
neuropsychological assessment.
The neuropsychological assessment consists of the Bicams battery, which includes: the SDMT assessing
processing speed, the CVLT assessing verbal memory, and the BVMTR assessing visual memory (Corfield and
Langdon, 2018, Deloire et al, 2018). To this short battery were added the following tests assessing: Verbal
(WAIS IV digit place span) and visual (MEM III) short-term memory, verbal (WAIS IV digit reverse span, digit
memory and digit letter sequence items) and visual (MEM III reverse span) working memory, attentional
abilities (CSCT for processing speed, TMT A and B for selective and divided attention, the Pasat for sustained
attention), and language (DO80 verbal fluencies and naming).
The third phase of this thesis project will consist in proposing to the patients of the second study with
cognitive disorders a personalized treatment. The sessions will be carried out remotely according to the
specificity of the disorders of each patient and their availability. Different supports will be used, digital tools
such as training software developed by the University of California San Francisco
(https://neuroscape.ucsf.edu/) and paper and pencil supports such as managmind and procog-sep developed
by Hélène Brissart. Teleconsultation sessions will also be offered to supervise the completion of the exercises
and to provide psychoeducational advice. After three months of care, they will go through the complete
assessment and questionnaires again. Statistical analyses using SPSS software will aim to evaluate whether the
improvement of cognitive disorders reduces the patients' work difficulties.
3- Feasibility
The WORKSEP project obtained the approval of the Committee for the Protection of Individuals in February
2021. Inclusion began in May 2021 in Nice and in June in Nancy. The main study is taking place in 17 university
hospitals in France under the auspices of the French-speaking Multiple Sclerosis Society (SFSEP). Heloise Joly is
the principal investigator of this project and Hélène Brissart is the co-investigator. We have obtained funding
for this project from the Foundation for Research in MS (ARSEP) in the amount of 48100 euros.
4- Relevance
The main study of WORKSEP will allow us to provide research and clinics with a short and easy-to-use tool to
evaluate the work difficulties of MS patients, knowing that none exists to date in French. This will make it
possible to propose, if necessary, appropriate treatment to alleviate these difficulties and to promote job
retention. The ancillary study will make it possible to evaluate the impact of cognitive and thymic disorders
(anxiety-depression), as well as fatigue on work difficulties. The remediation part will be, to our knowledge, the
first study aiming at proposing a treatment to mitigate the cognitive disorders that can induce work difficulties
in MS patients. Finally, we will use an innovative personalized and remote method to optimize the
improvement of each patient.
Keywords:
COGNITION -ADAPTATION COGNITIVE COMPLAINT SCALE- cognitive remediation- WORK
Department(s):
| Biology, Signals and Systems in Cancer and Neuroscience |
Publications:
