Researchers wrote about a symptom and impact questionnaire they developed for patients with cold agglutinin disease (CAD) in the European Journal of Hematology. 

CAD accounts for around one-quarter of all cases of autoimmune hemolytic anemia. Manifestations of the disease are more apparent in cold environments, and patients who experience symptoms of CAD typically complain of fatigue, weakness, and shortness of breath. In addition, they are at an elevated risk of thrombotic events, which may lead to early mortality. 

Although many diseases have their own quality-of-life scoring tools, these are conspicuously lacking in CAD. Hence, clinicians have a limited understanding about the patient experience regarding CAD. The authors of the study sought to identify symptoms and experiences deemed important to patients with CAD in order to develop a novel patient-reported outcome measure that can be used in future clinical settings. 

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This study was conducted between February 2020 and March 2021. The first phase of the study consisted of a literature review on patient-reported outcomes in CAD; the second phase included interviews with selected patients on their experience. Finally, the authors used the information gathered to develop a new symptom and impact questionnaire for CAD. 

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Patients who were interested in participating in this study first had to complete an eligibility questionnaire; individuals were deemed eligible if they were adults with a self-reported diagnosis of CAD based on underlying conditions such as infection or other autoimmune diseases (n=37). Selected participants were asked to participate in an hour-long telephone interview or web conference. Patients were given the space to answer open-ended questions about their experiences with CAD symptoms and treatment. 

The authors of the study developed an 11-item questionnaire specifically for patients with CAD to share their experiences with their clinicians. Another round of interviews with individuals with CAD was conducted to investigate the suitability of the questionnaire developed. 

“Future research is required to evaluate the responsiveness, validity, and reliability of the CAD-Symptoms and Impact Questionnaire in both clinical trial and real-world settings,” the authors concluded. 


Joly F, DasMahapatra P, DiBenedetti DB, Kosa K, Hill QA. Development of the Cold Agglutinin Disease Symptoms and Impact Questionnaire (CAD-SIQ)Eur J Haematol. Published online May 2, 2023. doi:10.1111/ejh.13984