Myasthenia Gravis
Conditions
Keywords
observationnal, fatigue, self-questionnaires, myasthenia gravis, ocular myasthenia gravis, generalized myasthenia gravis, comorbidities
Brief summary
After identifying myasthenic patients meeting the inclusion criteria, telephone contact with patients to suggest that they participate in the study by responding to various questionnaires composed of validated scales used in current practice (MG-ADL, MG-QoL-15, MFIS, FSS, PASS, HADS, Godin-Leisure Exercise Time) which will be completed either digitally (REDCap link) or by paper form if necessary. Consultation of patients' medical records to collect information relating to factors associated with fatigue or intrinsic illness (demographic data, comorbidities, progression of the illness, treatments, etc.). As part of their usual care, myasthenia patients answer questionnaires according to the following procedure : 1. Mailing of questionnaires to all eligible patients before their consultation The questionnaires are composed of scales validated and used in current practice (MG-ADL, MG-QoL-15, MFIS, FSS, PASS, HADS, Godin-Leisure Exercise Time). 2. Collection of questionnaires When patients come for consultation, the completed questionnaires are collected by the medical team. 3. Collection of questionnaires The responses to the questionnaires and the scores and results obtained from these questionnaires are integrated into the patients' medical records. As part of our study and in parallel with the patient's clinical follow-up, data relating to factors associated with fatigue or intrinsic illness (demographic data, comorbidities, progression of the disease, treatments, etc.) as well as responses to questionnaires will be collected.
Interventions
None listed
Sponsors
University Hospital, Clermont-Ferrand
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Adult patients who consulted the neurology department of the Clermont-Ferrand University Hospital between 01/01/2022 and 12/31/2024 in the context of their myasthenia and identified by the BAMARA and PMSI databases of the Clermont-Ferrand University Hospital * Diagnosis of autoimmune myasthenia gravis based on biological and/or electromyographic criteria * MGFA class from I to IV
Exclusion criteria
* Patients under guardianship or curatorship * Non-French speaking patients * Patients refusing to participate in the study
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Prevalence of fatigue | through study completion, an average of 6 month | Determine the prevalence of fatigue in myasthenic patients followed at the Clermont-Ferrand University Hospital by the Fatigue Severity Scale from 1 to 7. 1 = not significative fatigue. 7 = extreme fatigue. Significant if FSS \> 4. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Impact of the fatigue | through study completion, an average of 6 month | Describe the impact of fatigue on daily life by the Modified Fatigue Impact Scale from 21 to 84. 21 = not significative impact of fatigue on daily life, 84 = severe impact of the fatigue. Significant if MFIS \> 45. |
Other
| Measure | Time frame | Description |
|---|---|---|
| Associated factors with fatigue | through study completion, an average of 6 month | Study the factors associated with fatigue. Disease severity by MG-ADL (from 0 to 24), 0 means no symptom, 24 means severe symptoms. No specific threshold. |
Countries
France
Outcome results
None listed