Impact of Cold Agglutinin Disease and Its Related Fatigue on Patients' Daily Life: An Online Survey Among 50 US Patients


Joly F1, Schmitt LA2, McGee Watson PA3, Pain E4, Testa D4
1Sanofi, Chilly Mazarin, 91, France, 2Sanofi, Cambridge, MA, USA, 3Cold Agglutinin Disease Foundation (CADF), Cherry Hill, NJ, USA, 4Carenity, Paris, France

Presentation Documents

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.

Conference/Value in Health Info

2021-05, ISPOR 2021, Montreal, Canada

Value in Health, Volume 24, Issue 5, S1 (May 2021)




Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes


Rare and Orphan Diseases, Systemic Disorders/Conditions

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