@Article{info:doi/10.2196/34248,
author="Joly, Florence
and Schmitt, Lisa Anne
and Watson, Patricia Ann McGee
and Pain, Emilie
and Testa, Damien",
title="The Burden of Cold Agglutinin Disease on Patients' Daily Life: Web-Based Cross-sectional Survey of 50 American Patients",
journal="JMIR Form Res",
year="2022",
month="Jul",
day="22",
volume="6",
number="7",
pages="e34248",
keywords="autoimmune diseases; fatigue; perception; rare diseases; surveys and questionnaires; cold agglutinin disease; cold autoimmune hemolytic anemia",
abstract="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. ",
issn="2561-326X",
doi="10.2196/34248",
url="https://formative.jmir.org/2022/7/e34248",
url="https://doi.org/10.2196/34248",
url="http://www.ncbi.nlm.nih.gov/pubmed/35867390"
}