Health-related quality of life in primary immunodeficiencies : Impact of delayed diagnosis and treatment burden

Bibliographische Detailangaben
Veröffentlicht in:	Clinical immunology (Orlando, Fla.). - 1999. - 236(2022) vom: 02. März, Seite 108931
1. Verfasser:	Anderson, John T (VerfasserIn)
Weitere Verfasser:	Cowan, Juthaporn, Condino-Neto, Antonio, Levy, Donald, Prusty, Subhransu
Format:	Online-Aufsatz
Sprache:	English
Veröffentlicht:	2022
Zugriff auf das übergeordnete Werk:	Clinical immunology (Orlando, Fla.)
Schlagworte:	Journal Article Research Support, Non-U.S. Gov't Review Diagnostic delay IgRT Primary antibody deficiency Primary immunodeficiency QOL Treatment

Beschreibung
Zusammenfassung:	Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved. Accurate and timely diagnosis of primary immunodeficiencies (PID) is an ongoing effort. Individuals with PID can be severely impacted by their disease and many experience chronic complications, treatment burden, and reduced quality of life (QoL). This review focuses on the impact of delayed diagnosis and treatment burden on patient QoL and outcomes. Adults tend to experience longer delays in diagnosis than pediatric populations. The median diagnostic delay has reduced over recent decades, but remains high for some antibody deficiency variants, such as common variable immunodeficiency. The largest burden impacting QoL tends to be poorly controlled disease and persistent chronic conditions rather than treatment burden. Hospitalization, physician/emergency room visits, and bronchiectasis were the most expensive PID complications prior to diagnosis and cost analyses estimate cost reductions once appropriate treatment is initiated. A combination of poor awareness, lack of infrastructure, and resources supporting national registries play a major role in delayed diagnosis
Beschreibung:	Date Completed 06.05.2022 Date Revised 06.05.2022 published: Print-Electronic Citation Status MEDLINE
ISSN:	1521-7035
DOI:	10.1016/j.clim.2022.108931