Quality of life and burden of disease in patients with hereditary angioedema and their caregivers.

Background

Hereditary angioedema (HAE) substantially impairs patients' quality of life (QoL), both physically and psychologically, with unpredictable attacks that cause disruptions in education, work, and social life.

Objective

To identify key themes and existing knowledge gaps around the multifaceted burden of HAE.

Methods

A literature review was conducted in January 2024 through a search of medical literature data bases. English-language studies considered relevant to patient burden and QoL were selected for analysis.

Results

A total of 48 studies were included in the analysis; 50% were cross-sectional and 54% were conducted in North America. Twenty-three studies reported outcomes on QoL and pain, 10 studies reported outcomes on psychological distress, 16 studies reported outcomes on experiences with long-term prophylaxis, 36 studies reported outcomes on HAE attacks, and one study detailed caregiver burden. Patients with HAE had worse QoL compared with the general population, and worse QoL was associated with a higher frequency or severity of attacks, anxiety, and depression. The use of long-term prophylaxis improved QoL, and treatment satisfaction was driven by improvements in mental health and fostering a sense of control and independence.

Conclusion

HAE continues to substantially impact QoL of patients. Although recent work has demonstrated progress in standardizing assessment tools for QoL in HAE, additional research is needed to determine the correlation between individual patient factors and QoL.