A More Comprehensive Appreciation of the Quality of Life in FD/MAS: A Study Combining Quantitative and Qualitative Approaches – Dr. Juliette Jousse at the 2023 FD/MAS Community Conference and ICFDMAS meeting
Dr. Jousse discusses a study on the quality of life in Fibrous Dysplasia/McCune-Albright Syndrome (FD/MS) patients. Combining quantitative and qualitative approaches, the study was conducted at Edio Hospital in France. Quantitative findings using the SF36 questionnaire revealed impairments in FD/MS patients compared to the general population. To capture the patient experience, a qualitative study with six focus groups was conducted.
Topics covered included perceptions of the disease, diagnosis, limitations, treatment, and expectations of care. Patients showed variability in experiences, with some having few symptoms and others reporting as highly disabled. Pain was a dominant symptom, leading to psychological impacts like fear and anxiety. Patients faced limitations in daily activities, work, and sports. Despite challenges, patients expressed a desire for a normal living experience, adapting through various therapies. The main complaints included a lack of recognition, diagnosis delays, and the need for effective therapies. In conclusion, the study highlights the heterogeneity of FD experiences, emphasizing the need for new assessment tools and a multidisciplinary care network. Patients seek psychological follow-up and supportive networks.
The FD/MAS Alliance Community Conference combined patient-centered science and real-world strategies for patients and families living with fibrous dysplasia, McCune-Albright syndrome (FD/MAS). The FD/MAS Alliance (formerly Fibrous Dysplasia Foundation) is a community-driven 501c3 nonprofit that fosters the development of evidence-based treatments for Fibrous Dysplasia and McCune-Albright syndrome (FD/MAS). We advance research, provide education and channel the voices of individuals and caregivers with FD/MAS. To support our work visit www.fdmasalliance.org/donate