The Angioedema Quality of Life Questionnaire (AE-QoL) is a reliable and valid tool for assessing health-related quality of life (HRQoL) among individuals with hereditary angioedema, according to a study published in the Journal of Patient-Reported Outcomes.

Hereditary angioedema is characterized by painful angioedema attacks that can be fatal if they occur in the larynx. While hormonal changes and stress are known to be triggers for these attacks, many of them occur without cause. 

The unpredictable and debilitating nature of these attacks presents a significant hurdle to patients. Many patients with hereditary angioedema suffer from poor performance/attendance at school or work, and many suffer from poor mental health and worry they may pass their disease onto their children. 

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A number of HRQoL questionnaires are used to assess the impact of this disorder on quality of life. The AE-QoL is the first to be developed and validated to measure it in individuals who experience recurrent angioedema.

The AE-QoL contains questions in 4 domains: functional performance, energy levels/mood, psychological stress, and food intake. The authors of this study sought to evaluate the merits of this questionnaire in a group of adult patients with hereditary angioedema (n=40). 

The research team conducted interviews with both clinical experts and patients. For clinician interviews, the researchers discussed issues such as treatment efficacy, attack variability, and the use of patient-reported outcomes in clinical assessments. For patient interviews, patients were asked to complete the AE-QoL, which prompted further discussions into specific items. 

Read more about hereditary angioedema etiology 

This multinational study was conducted in the United States, Canada, Germany, and Spain. The clinician interviews revealed 16 signs and symptoms associated with angioedema attacks, including swelling, pain, shortness of breath, and nausea/vomiting. Clinicians across various countries stated that this disorder deteriorated mental health and school/work performance among their patients. Four out of 7 experts used disease-specific patient-reported outcome instruments to assess impact on quality of life. 

The patient interviews conducted revealed a wide spectrum of how the disease negatively impacted quality of life, including in domains such as work, relationships, physical exercise, and emotional stability. In addition, patients often reported feeling bad over missing events due to their ill health. The research team also discovered that patients found the AE-QoL to be easily understood and interpreted.

“Using both qualitative and quantitative methods, the AE-QoL was demonstrated to be an appropriate, interpretable, and reliable tool for assessing HRQoL in a cross-cultural population of adult patients with [hereditary angioedema],” the authors of the study concluded. 


Vanya M, Watt M, Shahraz S, et al. Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedemaJ Patient Rep Outcomes. 2023;7(1):33. doi:10.1186/s41687-023-00576-w