D1.77 - Hereditary Angioedema in Real Life: Unmet Needs from the Patient Perspective

This study aims to identify unmet needs in hereditary angioedema (HAE) from the patients’ perspective and to evaluate factors associated with disease control, psychological burden, and quality of life.

Adult HAE patients who were followed at a tertiary care adult allergy clinic were included. Angioedema Quality of Life Questionnaire (AEQoL), Hospital Anxiety and Depression Scale (HADS), and Angioedema Control Test (AECT) were applied to evaluate health-related quality of life, anxiety and depression, and disease control, respectively. 

A total of 64 patients were included, 45 (70.3%) of whom were female. The median age was 39 years (range, 18–70). A history of life-threatening attacks was present in 76.6% of patients. Based on HADS-A and HADS-D scores, 40.6% and 31.3% had anxiety and depressive symptoms, respectively. The mean AECT score was 10.1±4.1, and 54.7% of patients had uncontrolled disease. Impaired quality of life was observed in 29.7% of the patients based on the AE-QoL questionnaire. Patients with university-level education had lower rates of anxiety and depression (p=0.008 and p=0.007). A family history of HAE-related death was associated with poorer disease control and impaired quality of life (both p values = 0.006). Consistent access to on-demand treatment and social support during attacks was associated with better disease control and lower AE-QoL scores. Patients who did not receive appropriate emergency department management after diagnosis were significantly more likely to have uncontrolled disease (p = 0.036). Regular documentation of HAE attacks was significantly associated with better disease control, reflected by higher median AECT scores (p = 0.028) and a greater proportion of controlled disease (p = 0.047). The number of HAE attacks during the previous month showed significant correlations with all outcome measures, including anxiety (p = 0.008), depression (p = 0.004), disease control (p < 0.001), and quality of life (p < 0.001).

From the patients’ perspective, the most significant unmet needs were suboptimal management of HAE attacks in the emergency department, limited access to on-demand treatment, and insufficient social support. These findings emphasize the need for a comprehensive strategy to improve emergency preparedness, physician education, access to effective treatments, and patient support.