An interventional study of psychological support and therapeutic education program in Pemphigus and Dermatological Disease, sponsored by University Hospital, Rouen. Completed at 9 sites in France. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-02-05.
Sponsored by University Hospital, Rouen · Not applicable, Interventional, and Other
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.
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.
76 studies on the registry are indexed under Pemphigus; 18 are open to participants now.
This study's enrollment of 48 is above the median of 30 across 53 interventional studies indexed under Pemphigus.
Browse Pemphigus studies →University Hospital, Rouen is the lead sponsor of 418 studies on the registry; 106 are open to participants now.
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Patients with pemphigus vulgaris, diagnosed on a combination of:
Exclusion Criteria:
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
Behavioral: psychological support and therapeutic education program
analysis of vulnerability factors
evaluation of : perception by the patient of misdiagnosis, perception of a possible difference in assessment of the severity of his illness between himself and healthcare professionals, patient behavior in relation to available information sources, and the influence of information gathered on the illness experience, Patient trajectory during the diagnostic phase using individual interview and questionnaire
Time frame: 12 months
analysis of vulnerability factors
evaluation of : perception by the patient of misdiagnosis, perception of a possible difference in assessment of the severity of his illness between himself and healthcare professionals, patient behavior in relation to available information sources, and the influence of information gathered on the illness experience, Patient trajectory during the diagnostic phase using individual interview and questionnaire
Time frame: 6 months
assessment of anxiety, uncertainty, fear, coping strategies
assessment of anxiety, uncertainty, fear, coping strategies using individual interview and questionnaire
Time frame: 12 months
assessment of anxiety, uncertainty, fear, coping strategies
assessment of anxiety, uncertainty, fear, coping strategies using individual interview and questionnaire
Time frame: 6 months
This study is completed, as verified in Feb 2026. You cannot join it, but the record below documents what was studied.
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