Auto-immune Diseases and Quality of Life

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... ?

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Key information

Conditions

Systemic Auto-immune Diseases Quality of Life

Age range

18 year–75 year

Sex eligibility

All sexes

Study type

Observational

Primary location

CHU Dijon Bourgogne

Dijon, 2, France

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

completion of the quality of life questionnaire

Other

Primary outcomes

semi-directive individual interviews in the 3 groups of patients

Time frame: day one

Sponsors and collaborators

Lead sponsor

Centre Hospitalier Universitaire Dijon

Other

Registry information

Official study title

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

Acronym: QUALIMAIRAU

Important dates

Study start: 2015
Primary completion: 2016
Study completion: 2017
First posted: Aug 4, 2016
Registry last updated: Oct 10, 2017

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed