Auto-immune Diseases and Quality of Life (QUALIMAIRAU)

University Hospital Center (CHU) Dijon Bourgogne

Status: Completed

Conditions: Quality of Life; Systemic Auto-immune Diseases

Treatments: Other: completion of the quality of life questionnaire

Study type: Observational

Funder types: Other

Identifiers

NCT02855840

DEVILLIERS FMR 2014

Details and patient eligibility

About

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... ?

Enrollment: 77 patients

Sex: All

Ages: 18 to 75 years old

Volunteers: No Healthy Volunteers

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

Trial design

77 participants in 3 patient groups

systemic lupus erythematous

Treatment:

Other: completion of the quality of life questionnaire

systemic sclerosis

Treatment:

Other: completion of the quality of life questionnaire

inflammatory myopathy

Treatment:

Other: completion of the quality of life questionnaire