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The Burden of Cold Agglutinin Disease on Patients' Daily Life: Web-Based Cross-sectional Survey of 50 American
Florence Joly1, Lisa Anne Schmitt2, Patricia Ann McGee Watson3
1Health Economics And Outcomes Research, Sanofi, Chilly-Mazarin, France.
Insights
Cold agglutinin disease (CAD) significantly impacts patients
Area of Science:
- Hematology
- Autoimmune Disorders
- Patient-Reported Outcomes
Background:
- Cold agglutinin disease (CAD) is a rare autoimmune hemolytic anemia subtype.
- Limited research exists on CAD symptoms and patient-reported daily life impacts.
Purpose of the Study:
- To enhance understanding of CAD through a patient-centric survey.
- To assess the disease burden from the patient's perspective.
Main Methods:
- An internet-based survey was conducted in September 2020.
- Participants included American patients from CAD Unraveled and the Cold Agglutinin Disease Foundation.
Main Results:
- 90% of patients reported fatigue, often daily or constant.
- CAD impacts physical, emotional, social well-being, and finances.
- 54% considered their disease moderate to severe; 42% reported symptom worsening.
Conclusions:
- This study provides novel insights into CAD symptoms, fatigue, and disease variability.
- Patient perspectives highlight the significant burden of cold agglutinin disease.
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.
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