D3.358 - The impact of limited access to On-Demand Treatment for Hereditary Angioedema on Quality of life: a comparison between two income settings
Background
Background
Hereditary angioedema (HAE) is an inherited disorder characterized by recurrent and unpredictable episodes of soft tissue swelling. Recent guidelines emphasize the importance of timeous treatment of HAE attacks with on-demand treatment (ODT). However, data on access to and utilization of ODT, and the impact of HAE on quality of life in low-income settings remains limited.
Objective
To evaluate the factors influencing access to and utilization of ODT, and to determine the impact of HAE on quality of life, comparing results between a middle income African and high-income Asian (Hong Kong) settings
Method
Participants with HAE were recruited from Hong Kong and South Africa to complete an online or in-person questionnaire between July and October 2024.
Results
A total of 66 respondents completed the survey, including 30 from Hong Kong and 36 from South Africa. Majority of respondents were female (66,7%) and the mean age was 45 years (SD = 15,26). A quarter of South African participants did not have access to ODT compared to the Hong Kong cohort, of whom 100% reported access, despite South African patients reporting poorer HAE control (average AECT score: 8.6 vs. 14.8, p = <0,001) and higher quality-of-life impairment across all domains (AE-QoL score: 49/100 vs 7.3/100, p = < 0,001) (Figure 1). Notably, even South African HAE patients with adequate disease control (AECT>10) reported significant quality-of-life impairment (Figure 1). South Africans more frequently delayed utilization of ODT due to cost concerns and anxiety over accessing more doses of ODT. Despite these differences, both cohorts recognized the importance of timely ODT administration in mitigating attack severity and decreasing time to recovery.
Conclusion
This study highlights significant disparities in access to and utilization of ODT between settings, and emphasizes the impact of poorly controlled HAE on quality of life. There is a need for continued advocacy to improve equitable access to targeted HAE treatments, particularly in resource-constrained environments.
