Dyspnea, Myasthenia Gravis
Conditions
Keywords
dyspnea, breathlessness, respiratory
Brief summary
Individuals with MG (IwMG) experience shortness of breath that may be activity-related, occur at rest and even happen during sleep. Dyspnea is a complex, multidimensional and multifactorial symptom involving sensory perception, cognition and emotion. Identifying the cause(s) of dyspnea in MG may assist in finding therapeutic strategies, reducing discomfort, improving QoL and potentially limiting respiratory deterioration and incidence of MG crisis.
Detailed description
MYaResp is a prospective observational, cross-sectional study to evaluate dyspnea in adults with autoimmune myasthenia gravis. Study aims include to: * Describe the characteristics of dyspnea in IwMG * Understand contributing factors and factors associated with dyspnea in IwMG including the relationship between patient-reported dyspnea, disease severity and functional limitations. * Determine the most effective tests to identify the causes and contributing factors of dyspnea
Interventions
None listed
Sponsors
Institut de Myologie, France
APHP
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Age ≥18 * Confirmed diagnosis of autoimmune MG * Shortness of breath in daily life: score 1 or 2 on the respiration item on the MG- activities of daily living score * Signed consent form * Affiliated to or beneficiary of a social security scheme
Exclusion criteria
* Known Pregnancy * Known respiratory disorder (other than MG) * Recent (within past 4 weeks) respiratory infection * Current MG crisis or exacerbation (necessitating increase in MG medication \&/or hospital admission) * No dyspnea - score 0 or 3 on the respiration item on the MG- activities of daily living score * Severe cognitive impairment/guardianship
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Dyspnea questionnaires | baseline | Dyspnea-12 |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| cardiopulmonary exercise test | baseline | cycle ergometer |
| Polysomnography | baseline | evaluation of sleep disordered breathing |
| Functional measures | baseline | 6 minute walk test |
| Quality of life questionnaires | baseline | Revised version of the myasthenia gravis quality of life questionnaire (Burns, French validation Birnbaum) |
| Anxiety and depression | baseline | Hospital Anxiety and Depression Scale |
Countries
France
Outcome results
None listed