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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 :
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| patients suffering from myasthenia gravis (MGFA I to IV) followed in Clermont-Ferrand | 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 |
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| Measure | Description | Time Frame |
|---|---|---|
| Prevalence of fatigue | 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. | through study completion, an average of 6 month |
| Measure | Description | Time Frame |
|---|---|---|
| Impact of the fatigue | 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. | through study completion, an average of 6 month |
| Measure | Description | Time Frame |
|---|---|---|
| Associated factors with fatigue | 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. | through study completion, an average of 6 month |
| Associated factors with fatigue |
Inclusion Criteria:
Exclusion Criteria:
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Myasthenic patients with ocular or generalized form followed in Clermont Ferrand University Hospital (MGFA I to IV)
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| Name | Affiliation | Role |
|---|---|---|
| Frédéric Taithe | University Hospital, Clermont-Ferrand | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| CHU Clermont-Ferrand | Clermont-Ferrand | France |
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| ID | Term |
|---|---|
| D009157 | Myasthenia Gravis |
| D005221 | Fatigue |
| ID | Term |
|---|---|
| D020361 | Paraneoplastic Syndromes, Nervous System |
| D009423 | Nervous System Neoplasms |
| D009371 | Neoplasms by Site |
| D009369 | Neoplasms |
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Study the factors associated with fatigue. Impact of the disease on the daily-life activities by the MG-QoL-15 (from 0 to 60), 0 means no repercussion, 60 means massive repercussion. No specific threshold. |
| through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Level of anxiety and depression by HADS (< 7 : no symptoms, 8 -11 doubt, > 11 symptoms of anxiety and depression) | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. level of physical activity by Godin Leisure Time Activity Questionnaire (> 24 : active, 14-23 moderate activity, < 14 sedentary) | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Global feeling about the myasthenia by a simple question with the PASS (yes / no) | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic : age in years. | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic : weight in kilograms, height in meters, BMI in kg/m2 | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic : duration of the disease in years | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic : type of actual or passed treatment : corticoids, anticholinesterasic, immunosuppressive (Azathioprine, Mycophenolate mofetil, Ciclosporine, Rituximab), novel therapy (Efgartigimod-alpha, Zilucoplan, Ravulizumab). Yes or No for each treatment. | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic : dosage of actual or passed treatment (corticoids, anticholinesterasic, immunosuppressive (Azathioprine, Mycophenolate mofetil, Ciclosporine, Rituximab), novel therapy (Efgartigimod-alpha, Zilucoplan, Ravulizumab). Dosage in mg per day | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic and notably comorbidities : auto-immune (dysthyroiditis, diabete, lupus, rheumatoid arthritis, other). Yes or No. | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic and notably comorbidities : thymectomy. Yes or No. | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic and notably comorbidities : date of the last myasthenic crisis. Month and years or the year exclusively. | through study completion, an average of 6 month |
| Associated factors with fatigue | Study the factors associated with fatigue. Analysis of the medical record for demographic and notably comorbidities : date of the last use of crisis treatment (Immunoglobulin, Plasmatic Exchange). Date in month and years or the year exclusively. | through study completion, an average of 6 month |
| D010257 | Paraneoplastic Syndromes |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D019636 | Neurodegenerative Diseases |
| D020511 | Neuromuscular Junction Diseases |
| D009468 | Neuromuscular Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |