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Rev Med Interne ; 45(4): 187-193, 2024 Apr.
Article in French | MEDLINE | ID: mdl-38519305

ABSTRACT

INTRODUCTION: The life expectancy of ß-thalassemia patients has increased over the last 20 years. In this study, we evaluated the current health status and quality of life of these patients managed in a reference center in Marseille. METHODS: This is a single-center, descriptive study conducted between June and August 2019 in patients over 18 years of age with ß-thalassemia major or intermedia. Clinical and paraclinical data were collected retrospectively and the SF-36 health survey questionnaire was proposed to each patient. RESULTS: 43 of 64 selected patients were included and divided into 2 groups: 35 patients with transfusion-dependent ß-thalassemia and 8 patients with non-transfusion-dependent ß-thalassemia. Liver iron overload is the most frequent complication, present in 80% of transfusion-dependent and 62.5% of non-transfusion-dependent patients. Cardiac iron overload is present only in the transfusion dependent ß-thalassemia group (20%). Hypogonadotropic hypogonadism remains the most common endocrine disorder (41.9%) followed by osteoporosis (37.2%). Among the 31 patients who completed the SF-36 questionnaire, physical and mental quality of life scores were lowered in transfusion dependent (respectively 42.7 and 46.8) as in non-transfusion-dependent patients (respectively 43.8 and 28.9). CONCLUSION: Despite an improvement in medical care, our patients with ß-thalassemia show an alteration in their quality of life that will need to be characterized in the entire French cohort.


Subject(s)
Health Status , Quality of Life , beta-Thalassemia , Humans , beta-Thalassemia/therapy , beta-Thalassemia/epidemiology , beta-Thalassemia/complications , beta-Thalassemia/psychology , France/epidemiology , Male , Female , Adult , Retrospective Studies , Young Adult , Middle Aged , Blood Transfusion/statistics & numerical data , Iron Overload/epidemiology , Iron Overload/etiology , Surveys and Questionnaires , Adolescent
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