Quality of Life in Patients With Auto-inflammatory Diseases (MAI-PATIENT)

Assistance Publique - Hôpitaux de Paris

Status

Completed

Conditions

Hereditary Autoinflammatory Diseases

Treatments

Other: qualitative study

Study type

Interventional

Funder types

Other

Identifiers

NCT03569644

2017-A02673-50 (Other Identifier)

K160903J

Details and patient eligibility

About

This qualitative interview-based study aim to build a tool to assess quality of life in patients (adults or children) suffering from 6 autoinflammatory diseases (FMF, TRAPS, CAPS, MKD, Still and PFAPA).

Full description

Recent understanding of the physiopathological mechanisms that underpin autoinflammatory diseases (AIDs) allowed a revolution in the therapeutic management of these patients, particularly through the use of biotherapies. However new treatments need to be evaluated by valid tools. AIDAI score created and validated by our team evaluates activity of 4 autoinflammatory diseases. One of the important components, not explored by the scores currently available, is the impact of these treatments on quality of life (QoL) of patients. The existing quality of life scales are not adapted to these recurrent chronic pathologies. Throught a qualitative study based on interviews of patients and/ or parents, the investigators aim to build a tool to evaluate QoL in patients suffering from 6 aAIDs :familial Mediterranean fever (FMF), mevalonate kinase deficiency (MKD), tumour necrosis factor receptor-associated periodic syndrome (TRAPS), cryopyrin-associated periodic syndromes (CAPS), Still's disease and PFAPA syndrome.

Enrollment

39 patients

Sex

All

Volunteers

No Healthy Volunteers

Inclusion criteria

Any patient (child and adult) with one of the 6 AIDs (FMF, TRAPS, MKD or CAPS, PFAPA or Still's disease) regardless of the activity of the disease. The diagnosis will have been made by the referring physician according to criteria specific to each AIDs
Volunteer to participate in the study
With at least one parent present at the consultation if it is a child under 18 years old
For minors, agreement of the parents or their legal representative or one of the present parents
Information for children as far as their age and condition allow
Affiliation to a national health insurance.

Exclusion criteria

patient or relative (according to age)refuse to participate.
Bad understanding of French.
Other chronic inflammatory pathology associated (example: Crohn's, SPA, uveitis, psoriasis ...)