M Mounié, H Derumeaux Burel, L Molinier, N Costa, C Bulai Livideanu
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引用次数: 0
Abstract
Background: Indolent Systemic Mastocytosis (ISM) is a rare disease associated with numerous and diverse symptoms that significantly impact patients' overall health, psychological, emotional, and professional well-being, ultimately affecting their quality of life.
Objective: We aim to estimate the Disability-adjusted Life Year (DALY) of ISM to assess the burden for patients and society.
Methods: We used prospective and retrospective data on symptoms and quality of life from an ISM population recruited at the French expert center CEREMAST, to estimate Disability Weight allowing DALY calculation. An agent-based model was developed to more accurately assess the DALY of ISM over lifetime.
Results: Prospective data were available for 168 ISM patients. A wide variety of symptoms were assessed, with 12.7 (±5.9) symptoms per patient and huge impact on the quality of life. However, the emotional dimension and the impact on social life were also affected. Finally, we estimated the DALY per patient to be between 4.56 and 8.79, representing 89 to 168 per 100,000 inhabitants. The DALY of ISM is comparable to that of lymphoma, leukemia, and psoriasis.
Conclusion: This is the first study to focus on the DALY of ISM. Despite the differences in disease characteristics (such as prevalence, mortality, and age at diagnosis), DALY allows for the ranking of conditions and provides a better understanding of the disease burden. These data may help research prioritization by offering valuable information to healthcare policymakers.
期刊介绍:
JACI: In Practice is an official publication of the American Academy of Allergy, Asthma & Immunology (AAAAI). It is a companion title to The Journal of Allergy and Clinical Immunology, and it aims to provide timely clinical papers, case reports, and management recommendations to clinical allergists and other physicians dealing with allergic and immunologic diseases in their practice. The mission of JACI: In Practice is to offer valid and impactful information that supports evidence-based clinical decisions in the diagnosis and management of asthma, allergies, immunologic conditions, and related diseases.
This journal publishes articles on various conditions treated by allergist-immunologists, including food allergy, respiratory disorders (such as asthma, rhinitis, nasal polyps, sinusitis, cough, ABPA, and hypersensitivity pneumonitis), drug allergy, insect sting allergy, anaphylaxis, dermatologic disorders (such as atopic dermatitis, contact dermatitis, urticaria, angioedema, and HAE), immunodeficiency, autoinflammatory syndromes, eosinophilic disorders, and mast cell disorders.
The focus of the journal is on providing cutting-edge clinical information that practitioners can use in their everyday practice or to acquire new knowledge and skills for the benefit of their patients. However, mechanistic or translational studies without immediate or near future clinical relevance, as well as animal studies, are not within the scope of the journal.