Aslı Berivan Topçak, Ece Tüsüz Önata, Şeyma Genç, Sefika Ilknur Kökcü Karadag, Nilay Çalışkan, Güler Yıldırım, Hamit Boloğur, Hilal Güngör, Merve Karaca Şahin, Muhammed Fatih Erbay, Hasan Tunç Şarman, Özlem Terzi, Emek Kocatürk, Frank Siebenhaar, Öner Özdemir, Deniz Özçeker
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引用次数: 0
Abstract
Background: Mastocytosis imposes a considerable burden on patients' quality of life. While validated QoL instruments are available for adults with systemic mastocytosis, no disease-specific quality-of-life measure has yet been developed for pediatric populations.
Objective: This study aimed to develop and validate two disease-specific quality of life instruments-the Pediatric Mastocytosis Quality of Life (PedMQLS) and the Pediatric Mastocytosis Quality of Life-Parent (PedParentMQLS) scales-for use in pediatric mastocytosis.
Methods: A total of 51 children and their parents were recruited from two specialized tertiary centers in Turkey. Scale items were generated based on expert opinion and literature review. Content validity was evaluated using the Davis method, and construct validity was assessed through exploratory factor analysis (EFA). Internal consistency was measured using Cronbach's alpha, and convergent validity was examined by correlating results with established dermatology-specific quality of life instruments.
Results: Both scales consisted of 14 items and revealed a two-factor structure covering social and emotional domains. Pediatric Mastocytosis Quality of Life-Parent Scale showed high internal consistency (α = 0.909), while the Pediatric Mastocytosis Quality of Life Scale demonstrated acceptable reliability (α = 0.785). Significant correlations with comparable instruments supported the scales' convergent validity.
Conclusion: These newly developed scales are the first validated quality of life instruments specific for pediatric mastocytosis. This study is preliminary; validation through multicenter studies with larger sample.
期刊介绍：
Allergy, Asthma & Clinical Immunology (AACI), the official journal of the Canadian Society of Allergy and Clinical Immunology (CSACI), is an open access journal that encompasses all aspects of diagnosis, epidemiology, prevention and treatment of allergic and immunologic disease.
By offering a high-visibility forum for new insights and discussions, AACI provides a platform for the dissemination of allergy and clinical immunology research and reviews amongst allergists, pulmonologists, immunologists and other physicians, healthcare workers, medical students and the public worldwide.
AACI reports on basic research and clinically applied studies in the following areas and other related topics: asthma and occupational lung disease, rhinoconjunctivitis and rhinosinusitis, drug hypersensitivity, allergic skin diseases, urticaria and angioedema, venom hypersensitivity, anaphylaxis and food allergy, immunotherapy, immune modulators and biologics, immune deficiency and autoimmunity, T cell and B cell functions, regulatory T cells, natural killer cells, mast cell and eosinophil functions, complement abnormalities.
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