Auto-immune Diseases and Quality of Life

Study Overview
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Brief Summary
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Systemic lupus erythematous (SLE), systemic sclerosis (Ssc) and inflammatory myopathy (IM) are rare diseases, whose prevalence is estimated at 43, 15 and 10 cases, respectively, for 100 000 inhabitants in France. These diseases belong to the group of auto-immune diseases and require specialized follow-up in an expert centre. The repercussions of SLE, Ssc and IM on the everyday life of patients are heavy, and notably linked to skin involvement, to diminished functional capacities and psychological problems. The vast majority of these diseases concern middle-aged, professionally-active individuals, for whom the socio-professional repercussions are major and too often neglected. The aim of this study is to analyse the consequences of auto-immune diseases on quality of life. Current quality of life questionnaires are not suitable, and do not reveal the reality of the situation and its different nuances. In this research, the quality of life of patients will be envisaged through their everyday lives. How do these patients construct the social reality of the disease? How do they perceive their health status and their social situation? How do they organize their everyday lives around the disease: work, leisure, relationships with their entourage... ?

Official Title
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Qualitative Study of the Consequences of Auto-immune Diseases on Quality of Life

Conditions
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Systemic Auto-immune Diseases, Quality of Life

Intervention / Treatment
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* Other: completion of the quality of life questionnaire


Participation Criteria
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Eligibility Criteria
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Inclusion Criteria: For all patients: Patients aged 18 to 75 years Patients able to understand written and spoken French Patients who have been given oral and written information about the research For patients with SLE: - SLE defined by American College of Rheumatology (ACR) 1997 criteria For patients with systemic sclerosis: - SSc according to the Leroy or American Rheumatism Association (ARA) criteria For patients with IM: - IM according to the Trojanov criteria Exclusion Criteria: Refusal to take part in the study Cognitive/psychological status incompatible with interviews

Ages Eligible for Study
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Minimum Age: 18 Years
Maximum Age: 75 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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No

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| systemic lupus erythematous<br> | Other: completion of the quality of life questionnaire<br> <br> |
| systemic sclerosis<br> | Other: completion of the quality of life questionnaire<br> <br> |
| inflammatory myopathy<br> | Other: completion of the quality of life questionnaire<br> <br> |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| semi-directive individual interviews in the 3 groups of patients |  | day one |