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The Quality of Life of Children and Adolescents with X-Linked Agammaglobulinemia
Authors:Annarosa Soresina  Renata Nacinovich  Monica Bomba  Morena Cassani  Anna Molinaro  Antonella Sciotto  Silvana Martino  Fabio Cardinale  Domenico De Mattia  Caterina Putti  Rosa Maria Dellepiane  Leonardo Felici  Giovanni Parrinello  Francesca Neri  Alessandro Plebani
Affiliation:Annarosa Soresina, Renata Nacinovich, Monica Bomba, Morena Cassani, Anna Molinaro, Antonella Sciotto, Silvana Martino, Fabio Cardinale, Domenico De Mattia, Caterina Putti, Rosa Maria Dellepiane, Leonardo Felici, Giovanni Parrinello, Francesca Neri, Alessandro Plebani and IPINet (Italian Network for Primary Immunodeficiencies)
Abstract:Introduction  The health-related quality of life in X-linked agammaglobulinemia was investigated in 25 children and adolescents patients through the Italian version of Pediatric Quality of Life Inventory 4.0 Generic Core Scale for patients aged less then 18 years, comparing child perception to that of the parents and the physician’s evaluation. The data were compared with the ones of 80 healthy controls and the literature data of a group of patients with rheumatic diseases. Discussion  The agammaglobulinemia subjects perceived a lower global quality of life than the healthy subjects, but significantly higher than the rheumatic diseases controls. The clinical relevance of health-related quality of life assessment in X-linked agammaglobulinemia pediatric patients is discussed. Annarosa Soresina and Renata Nacinovich contributed equally to this article.
Keywords:X-linked agammaglobulinemia  children  parents  health-related quality of life  PedsQL 4.0 Generic Core Scale
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