Identification of Vulnerability Factors in the Course of Pemphigus Patients (SHS-Pemphigus)

University Hospital, Rouen

Status: Completed

Conditions: Dermatological Disease; Pemphigus

Treatments: Behavioral: psychological support and therapeutic education program

Study type: Interventional

Funder types: Other

Identifiers

NCT02237313

2014/063/HP

2014A0067740 (Registry Identifier)

Details and patient eligibility

About

The bullous pemphigoid treatment is based on corticosteroids continued for several years. Pemphigus causes some patients a psychological impact and sometimes major vulnerability that can occur not only at diagnosis but also at later stages of disease progression. Our hypothesis is that these episodes of vulnerability may be under four kinds of factors that may be connected to the plurality of the history of these patients, and the resources they can mobilize throughout this experience, generating inequality in management and "work" around the disease.

Full description

The originality of the project lies in its multidisciplinary approach (dermatology, psychology, sociology). No such study has yet been carried out in the pemphigus who has been the subject of a very small number of works in sociology or psychology. The only studies are studies of quality of life with no longitudinal follow-up. The perspective of qualitative and quantitative data, sociological and psychological approaches, should allow more innovative and adapted to the medico-social and psychological care of patients with pemphigus approaches. The purpose of this study is to identify the determinants leading to moments of vulnerability in the course of patients with pemphigus in order to be able to offer preventive or corrective actions to improve the experience of the disease.

Enrollment: 48 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Patient major

• Patients with pemphigus vulgaris, diagnosed on a combination of:

  1. clinical signs and
  2. histological image above basal epithelial detachment with intra acantholysis,
  3. direct immunofluorescence showing deposition of Immunoglobulin G and / or C3 to the surface of keratinocytes

• Join a social security scheme

• patient has been informed and have signed consent to participate in the study

Exclusion criteria

• Person placed under judicial protection,
• Patient without liberty by administrative or judicial decision,
• Patient participating in another trial for the duration of monitoring.

Trial design

48 participants in 1 patient group

prevalent cases

Experimental group

Description:

40 prevalent cases correspond to patients with known pemphigus. Emphasis will be on included patients at different times of the course of their disease. 8 incident cases recruited through the center of Rouen and following an intervention program with psychological support and therapeutic education program

Treatment:

Behavioral: psychological support and therapeutic education program