Df-Life : Quality of Life in Patients With Fibrous Dysplasia

Patients will be contacted and focus groups will be organized with 6 to 8 patients presenting different types of FD: monostotic, polyostotic, with or without craniofacial damage. Several focus-groups will be conducted with men only or women only. Patients will be led in a semi-directive manner by a moderator who will use an interview grid listing all the topics to be addressed: symptoms, self-image, psychological and emotional well-being, difficulties in daily life and adaptative strategies. The discussions will be recorded and transcribed verbatim. Data will be analyzed manually by 2 investigators and with the help of a semantic analysis software. The objective is to bring out common notions about the quality of life of patients, their psychological and emotional well-being, their difficulties in daily life and their coping strategies according to their condition. Differences or similarities between men and women will be investigated.

Participants will receive 3 questionnaires to complete: the SF36 questionnaire (quality of life), the SELF-MOQ questionnaire (olfaction evaluation) and a demographic questionnaire. Other data required for the study will be extracted from the medical record: age, weight, height, affected bone sites, Radiological/ biological activity data, sensorial deficit, medication. For each questionnaire, scores will be calculated and compared between the different FD patient populations according to sex, age and type of FD.