The Italian Anderson-Fabry Association commissioned a survey by C.R.E.A. Sanità in 2018 to evaluate various socio-economic aspects affecting the families and patients living with Fabry disease, such as the quality of life, methods of treatment, support from the National Health Service, and the costs related to the treatment of the disease.
106 patients with a confirmed diagnosis of Anderson Fabry responded to the survey; based on the estimates of the prevalence of Fabry disease among the Italian population, this survey’s coverage rate is within the range of 6.6% – 15.1%. The results of the study led to the scientific publication Survey about the Quality of Life of Italian Patients with Fabry Disease published in the open-access journal Diseases on October 2021.
The objective of this study was to calculate the direct and indirect costs borne by the Italian National Health System and the patients. Overall, the findings of the study highlight a good coverage of the National Health System for people with Fabry disease, other issues related to costs of assistance benefits and the indirect costs of managing the illness borne by the patient and family members.
