Accepted for/Published in: JMIR Formative Research
Date Submitted: Oct 13, 2021
Open Peer Review Period: Oct 13, 2021 - Dec 8, 2021
Date Accepted: Jun 1, 2022
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
The Burden of Cold Agglutinin Disease on Patients’ Daily Life: an Online Survey of 50 American Patients
ABSTRACT
Background:
Cold agglutinin disease (CAD) is a rare and poorly understood disorder affecting 15% of patients with autoimmune hemolytic anemia. Few studies have assessed CAD symptoms and their impact on daily life, and these did not address the patients’ perspective.
Objective:
The aim of this research is to increase the knowledge on 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 from the Cold Agglutinin Disease Foundation.
Results:
Fifty respondents were included in the study. Ninety percent of patients reported having experienced fatigue. Fatigue was mainly reported on a daily basis, and almost a third said it was constant through the day. It has also been shown that CAD had a great impact on physical well-being, emotional well-being, social life, and patients’ household finances. The disease varies over time, with or without symptoms. Eighty-eight percent of patients reported previous episodes of increased intensity/sensitivity of their CAD symptoms, with a mean number of episodes reported of 4.5 during the past year. More than half of the patients considered their disease as moderate or severe, and over 40% of the study group reported that their symptoms had worsened since the time of diagnosis.
Conclusions:
Our study has raised new data on CAD symptoms, in particular on the importance and type of fatigue, and the fluctuation of CAD symptoms.
Citation
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.