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.
SARS‐CoV‐2 infection complicated with cold agglutinin disease and myositis