%0 Journal Article
%@ 2561-326X
%I JMIR Publications
%V 6
%N 7
%P e34248
%T The Burden of Cold Agglutinin Disease on Patients’ Daily Life: Web-Based Cross-sectional Survey of 50 American Patients
%A Joly,Florence
%A Schmitt,Lisa Anne
%A Watson,Patricia Ann McGee
%A Pain,Emilie
%A Testa,Damien
%+ Health Economics And Outcomes Research, Sanofi, 1 Avenue Pierre Brossolette, Chilly-Mazarin, 91380, France, 33 01 60 49 77 77, florence.joly@sanofi.com
%K autoimmune diseases
%K fatigue
%K perception
%K rare diseases
%K surveys and questionnaires
%K cold agglutinin disease
%K cold autoimmune hemolytic anemia
%D 2022
%7 22.7.2022
%9 Original Paper
%J JMIR Form Res
%G English
%X Background: Cold agglutinin disease (CAD) is a rare disorder, affecting 15% of patients with autoimmune hemolytic anemia. Few studies have assessed CAD symptoms and their impact on daily life, but these studies did not address the patients’ perspectives. Objective: The aims of this study were to increase the knowledge about CAD through a patient-centric survey and to gain a better understanding of the burden of this disease. Methods: We conducted an internet-based survey in September 2020 among American patients registered on the CAD Unraveled website and members of the Cold Agglutinin Disease Foundation. Results: A total of 50 respondents were included in this study. Totally, 90% (45/50) of the patients reported having experienced fatigue. Fatigue was mainly reported on a daily basis, and approximately one-third of these patients (13/45, 29%) said that their fatigue was constant throughout the day. It has also been shown that CAD has a great impact on patients’ physical well-being, emotional well-being, social life, and household finances. The disease varies over time, with or without symptoms. A total of 88% (44/50) of the patients reported previous episodes of the increased intensity or sensitivity of their CAD symptoms, with a mean of 4.5 (SD 5.4) episodes reported during the past year. More than half of the patients (27/50, 54%) considered their disease to be moderate or severe, and 42% (21/50) of the study group reported that their symptoms had worsened since the time of diagnosis. Conclusions: Our study has provided new data on CAD symptoms, particularly data on the importance and type of fatigue and the fluctuation of CAD symptoms. 
%M 35867390
%R 10.2196/34248
%U https://formative.jmir.org/2022/7/e34248
%U https://doi.org/10.2196/34248
%U http://www.ncbi.nlm.nih.gov/pubmed/35867390