Quality of Life in Patients With Auto-inflammatory Diseases

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

39 participants

Study Classification

INTERVENTIONAL

Study Start Date

2018-06-06

Study Completion Date

2021-04-01

Brief Summary

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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).

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Detailed Description

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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.

Conditions

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Hereditary Autoinflammatory Diseases

Study Design

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Allocation Method

NA

Intervention Model

SINGLE_GROUP

The study is based on interviews that will be recorded in digital audio and then transcribed literally. The consultation for this research is 45 to 90 minutes long. This prolongs their presence in consultation with the doctor. For this reason, the study was classified as Interventional according to French regulations

Primary Study Purpose

OTHER

Blinding Strategy

NONE

Study Groups

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qualitative study

heterogeneous group of patients

Group Type OTHER

qualitative study

Intervention Type OTHER

Interviews

Interventions

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qualitative study

Interviews

Intervention Type OTHER

Eligibility Criteria

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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 ...)

Eligible Sex

ALL

Accepts Healthy Volunteers

No