Quality of Life in Patients With Auto-inflammatory Diseases
Түлхүүр үгс
Хураангуй
Тодорхойлолт
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.
Огноо
| Сүүлд баталгаажуулсан: | 06/30/2020 |
| Эхлээд оруулсан: | 06/14/2018 |
| Тооцоолсон элсэлтийг оруулсан: | 06/24/2018 |
| Эхлээд нийтэлсэн: | 06/25/2018 |
| Сүүлийн шинэчлэлтийг оруулсан: | 06/30/2020 |
| Сүүлийн шинэчлэлтийг нийтэлсэн: | 07/01/2020 |
| Сургалтын бодит эхлэх огноо: | 06/05/2018 |
| Тооцоолсон анхан шатны ажил дуусах огноо: | 11/30/2020 |
| Судалгааны ажлыг дуусгах өдөр: | 11/30/2020 |
Нөхцөл байдал эсвэл өвчин
Хөндлөнгийн оролцоо / эмчилгээ
Other: qualitative study
Үе шат
Arm Groups
| Гар | Хөндлөнгийн оролцоо / эмчилгээ |
|---|---|
| Other: qualitative study heterogeneous group of patients | Other: qualitative study Interviews |
Эрхийн шалгуур
| Суралцах боломжтой хүйс | All |
| Эрүүл сайн дурын ажилтнуудыг хүлээн авдаг | Тийм ээ |
| Шалгуур үзүүлэлтүүд | 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 ...) |
Үр дүн
Анхан шатны үр дүнгийн арга хэмжээ
1. Qualitative evaluation of quality of life by interviews of patients and/or parents [45 to 90 min]
