90% of CAD Patients Experience Symptoms of Fatigue: US Survey
Nearly half say fatigue occurs on daily basis
Fatigue is one of the most common symptoms of cold agglutinin disease (CAD), affecting 90% of patients, a U.S. survey found.
Nearly half of people with the rare autoimmune disorder who responded to the survey, on the disease burden imposed by CAD, reported experiencing fatigue on a daily basis.
According to researchers, “health care professionals should proactively discuss ways to manage fatigue, which is not often discussed during consultations.”
Overall, the study found that CAD had a negative impact on patients’ daily activities, household finances, and physical and emotional well-being, as well as on their social life.
The survey findings were reported in a study, “The Burden of Cold Agglutinin Disease on Patients’ Daily Life: Web-Based Cross-sectional Survey of 50 American Patients,” published in the journal JMIR Formative Research.
In CAD, antibodies called cold agglutinins bind to red blood cells at low temperatures, activating an immune response that leads to the cells’ destruction. As a result, tissues in the body do not receive enough oxygen, which can lead to fatigue and pain.
However, few studies have addressed the disease burden of CAD from a patient perspective. Researchers say this is important for better disease management.
Symptoms of CAD
To address this gap, a team led by investigators in France and the U.S. conducted an internet-based survey in which U.S. members of the CAD Unraveled website were asked to complete a questionnaire. Created by Sanofi, the CAD Unraveled website is designed to provide support and information to patients and aid in their disease management.
Sanofi markets and is continuing to develop Enjaymo, a therapy approved in the U.S. in February 2022 to reduce hemolysis, or red blood cell destruction.
The invitation was open during September 2020. The survey also was shared with members of the Cold Agglutinin Disease Foundation (CADF).
The questionnaire was composed of 44 questions and was designed by Carenity, in collaboration with Sanofi and CADF. The first part focused on gathering participants’ demographic data, such as age, place of residence, and profession, as well as symptoms and disease status.
The second part addressed the patients’ perceptions of CAD severity and progression, while third section focused on expectations of CAD-related fatigue management. The two last parts evaluated disease management tools and patients’ perceptions of disease burden to several aspects of daily life.
From an initial group of 116 CAD patients, 50 (43.1%) completed the survey. Respondents resided across the U.S. and had a mean age of 66.7 years. The majority (76%) were not working at the time they completed the survey.
At diagnosis, patients had an average age of 59.2 years. In 88% of the cases, diagnosis was achieved following blood test results, and in 52% of the cases, after patients experienced symptoms of CAD.
In the majority of cases, these CAD symptoms included fatigue (74%), shortness of breath (38%), and acrocyanosis (36%), a condition characterized by a persistent, painless bluish discoloration in the hands and feet.
More than half of the patients (54%) considered their disease to be moderate or severe. Patients with more severe forms of the disease said they were not satisfied with their management tools.
A total of 47 respondents (94%) reported experiencing increased disease severity or new symptoms since being diagnosed.
Fatigue was the most reported symptom, experienced by 90% of patients. Around a third of these individuals (29%) said fatigue was constant during the day, while 22% said it was more intense in the afternoon.
Shortness of breath was reported by 58% of patients, and joint pain, headaches, or acrocyanosis by 44%.
CAD also had an impact on patients’ physical well-being, emotional well-being, social life, and household finances.
The need to take naps and to limit daily tasks were major detriments to physical well-being for most participants. Depression, frustration, and anxiety affected their emotional well-being. Patients who were employed at the time of the survey recognized the impact of CAD on their professional lives, and more than half (60%) said the disease affected their household finances.
“In total, 74% (37/50) of the patients had to cover out-of-pocket cost associated with the disease,” the researchers wrote. These costs mainly were due to alternative medicines (42%), transportation to medical appointments (32%), and office visits or hospital care (32%).
Overall, “our study provides new insights into the symptoms associated with CAD and the impact of the disease from the patient’s perspective,” the researchers wrote.
“Patients with CAD experienced difficulty in receiving proper diagnosis and treatment owing to their rare disease; hence, they should be diagnosed earlier and, then, closely monitored and advised by a health care provider with knowledge of how to treat the disease,” they wrote.
Researchers also stressed that additional studies are needed to clarify the impact of CAD symptoms, particularly fatigue, on patients’ quality of life.
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