Hereditary angioedema (HAE) is a rare, potentially life-threatening condition characterised by recurrent and unpredictable swelling attacks that can affect the skin, gastrointestinal tract, and airway. Beyond the physical symptoms, HAE places a substantial psychological and social burden on patients, with anxiety around the timing and severity of attacks often shaping daily life decisions. While newer therapies have demonstrated clinical effectiveness, less is known about how these treatments influence broader health-related quality of life (HR-QoL), particularly from a patient perspective in Canada.
A recent Canadian study sought to address this gap by exploring how patients experience long-term prophylaxis with subcutaneous plasma-derived C1 inhibitor concentrate (SC-pdC1INH), focusing not only on symptom control but also on emotional, social, and functional well-being.
Fewer Attacks, Greater Confidence
The mixed-methods study combined qualitative telephone interviews with a quantitative assessment using the Angioedema Quality of Life questionnaire (AE-QoL). Twenty adults with HAE participated, with the majority diagnosed with Type 1 or 2 disease and a mean age of 51 years. Patients were interviewed between May and July 2023 to capture real-world experiences of living with HAE while receiving SC-pdC1INH.
Participants consistently reported improved disease control since starting treatment. Notably, 85% experienced fewer attacks over the past year, and 60% reported having no or almost no attacks during that time. These clinical improvements translated into meaningful emotional benefits. Three-quarters of patients described reduced stress or anxiety related to the fear of attacks, while 95% reported greater confidence in managing their condition.
Quality of Life Gains Beyond Symptoms
Improvements extended beyond emotional well-being. Around 40% of patients noted increased productivity, including fewer missed days at work or school, and half reported better physical ability or overall physical well-being. These gains were reflected in the AE-QoL results, with a mean total score of 34, indicating a relatively small impact of HAE on quality of life in the four weeks prior to assessment.
Importantly, qualitative interviews highlighted that relief from constant vigilance and uncertainty was central to patients’ improved quality of life. Reduced anxiety allowed for greater social participation and long-term planning, underscoring the broader value of effective prophylactic treatment.
Implications for Long-Term HAE Management
Overall, the findings suggest that long-term prophylaxis with SC-pdC1INH offers benefits across multiple HR-QoL domains, with the most pronounced effects seen in emotional, social, and physical well-being. By centring patient experiences, the study reinforces the importance of considering quality of life outcomes alongside clinical efficacy when evaluating HAE therapies, particularly in chronic, lifelong conditions where psychological burden plays a major role.
Reference
Waserman S et al. Health-related quality of life in hereditary angioedema patients treated with subcutaneous C1 inhibitor (C1-INH) therapy in Canada. Allergy Asthma Clin Immunol. 2025;DOI: 10.1186/s13223-025-00991-2.
