Fibrous Dysplasia
Conditions
Keywords
Fibrous dysplasia, quality of life
Brief summary
Fibrous dysplasia (FD) is a congenital skeletal disorder with multiple complications such as bone pain, fractures, deformities and nerve compression. Few quantitative studies have demonstrated its physical, mental and social negative impacts on patients but none have qualitatively evaluated their global quality of life. Our hypothesis is that a better knowledge of the quality of life of FD patients should allow to target the actions to be implemented to improve patients'care. The main objective of this qualitative research is therefore to investigate the quality of life of FD patients through 2 approaches: a qualitative study with focus groups interviews addressing several themes: self-image, psychological and emotional well-being, difficulties and adaptative strategies; and a quantitative study to measure the impact of FD on quality of life and on olfaction (sometimes affected by nerve compression due to the disease) using standardized questionnaires Short Form 36 (SF36) and Self-reported Mini Olfactory Questionnaire (SELF-MOQ).
Interventions
OTHERFD qualitative study on quality of life
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.
OTHERFD quantitative sudy on quality of life and olfaction.
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.
Sponsors
Hospices Civils de Lyon
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Men and women * 18 years and more * with Fibrous dysplasia * Being followed in the rheumatology Department of the E. Herriot Hospital in Lyon. * Non-opposition to take part in the study * written consent to the audio recording of the discussions.
Exclusion criteria
* Legal incapacity or limited legal capacity * Psychiatric or neurological condition that severely impairs comprehension * Difficulty understanding spoken French * Patients with another pathology with a major impact on quality of life
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| FD Qualitative study: notions on quality of life | during group interview (90 minutes) | quality of life concepts that will emerge during group interviews. |
| FD Quantitative study: scores of quality of life and olfaction impairment | during 30 minutes | quality of life measured with SF36 score. Patients will answer to 11 questions. Olfaction impairment measured with SELF-MOQ olfaction score. Patients will answer to 14 questions |
Countries
France
Outcome results
None listed