OBJECTIVES : To assess the impact of Cold Agglutinin Disease (CAD) and its related effects on patients’ daily life.

METHODS : An internet-based survey hosted on Carenity was conducted in September 2020 among patients registered on the CAD Unraveled website and members from the Cold Agglutinin Disease Foundation, through a questionnaire composed of 39 closed questions and 5 open-ended questions. Adult patients living with CAD in the USA were eligible.

RESULTS : Fifty respondents (mean age 66.7 years, 82% female) were included in the study, of which 76% were unemployed. Mean time since diagnosis was 7.5 years.

Ninety percent of patients experienced fatigue due to CAD. Fatigue was experienced on a daily basis by 44% of patients, 27% experienced it several times a week and 16% only after exertion. When fatigue was experienced, 31% mentioned that it usually fluctuated from moment-to-moment, 29% reported that it was constant throughout the day and 22% that it was greater in the afternoon.

More than half of the patients considered their disease as severe or moderate. All aspects of daily life (emotional well-being, physical well-being, etc.) were greatly affected by CAD, particularly by the related fatigue. Ninety percent of employed patients had their professional life impacted and 60% of patients mentioned their household finances were impacted by their CAD.

Cold avoidance was the main management method used (82%) by patients. Almost all patients who experienced fatigue had also implemented a solution to cope with it: taking breaks during the day (71%), managing supply of energy (60%) or taking vitamins (58%). However, only one-third of patients were satisfied with the management method used and solutions implemented.

CONCLUSIONS : CAD is a challenging and life-impacting condition, primarily due to the severe fatigue. Professional life and household finances are some of the most impacted aspects of patients’ lives.