Patients with cold agglutinin disease (CAD) may experience a recurrent decline in their quality of life, according to a study recently published in JMIR Formative Research.

The study “highlights the importance and type of fatigue, seriousness of the disease as perceived by patients, impact of CAD even when no symptoms are experienced, and importance of CAD symptom variation, implying that the impact of CAD varies over time,” the authors explained.

The research included 50 individuals previously diagnosed with CAD who completed an online questionnaire. All participants were from the United States, and their mean age was 66.7 years, with a men-to-women ratio of 0.22.

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The most frequently reported symptom was fatigue, with almost all of the patients (90%) claiming to have experienced it at some point in the course of their disease. Furthermore, 44% reported having episodes of fatigue daily, 27% multiple times per week, and 16% after physical effort.

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Fatigue affected patients’ quality of life, interfering with physical, social, financial, and other daily activities. Regardless, hardly any patient (11%) among those that had experienced it requested advice or guidance from a professional to ameliorate this symptom.

More than half of the participants (54%) cataloged their disease as moderate or severe, and 42% said their symptoms are currently worse than when they were diagnosed. Almost all of them (88%) reported past episodes of symptoms worsening.

Moreover, 38% of the participants admitted having 1 or more CAD episodes in the previous year. Among these patients, the average was 4 to 5 crises, most commonly triggered by cold temperatures. Hence, the most often preventive measure was avoiding cold environments. However, only 34% of the patients claimed satisfaction with their management method.

These findings emphasize the need for the medical system to better support and aid patients with CAD in the course of their disease, the research team explained.

“Specifically, health care professionals should proactively discuss ways to manage fatigue, which is not often discussed during consultations,” the authors wrote.


Joly F, Schmitt L, Watson P, Pain E, Testa D. The burden of cold agglutinin disease on patients’ daily life: web-based cross-sectional survey of 50 american patients. JMIR Form Res. Published online July 22, 2022. doi:10.2196/34248