Available online 27 March 2023

What is already known about this topic?

Hereditary angioedema results in an impaired quality of life in patients and a substantial socioeconomic burden to society due to medical costs and lost productivity

What does this article add to our knowledge?

Disease was poorly controlled in 36% of participants. Patients’ quality of life dropped substantially during an angioedema attack. On average total costs per year per patient amount to €22,764, predominantly existing of HAE-medication costs.

How does this study impact current management guidelines?

Additional prophylactic strategies seem to be needed to improve disease control in a large subset of HAE patients.

According to the current treatment guidelines, the goals of treatment of patients with hereditary angioedema (HAE) are to achieve total control of the disease and to normalize patients’ lives.

This study aims to establish the entire burden of HAE comprising disease control, treatment satisfaction, reductions in quality of life and societal costs.

Adult HAE patients under treatment at the Dutch national centre of reference completed a cross-sectional survey in 2021. The survey consisted of different questionnaires: Angioedema-specific questionnaires (4-week Angioedema Activity Score and Angioedema Control Test); quality of life questionnaires (Angioedema Quality of Life questionnaire and EQ-5D-5L); the Treatment Satisfaction Questionnaire for Medication; and societal costs questionnaires (iMTA Medical Consumption Questionnaire, and iMTA Productivity Cost Questionnaire).

The response rate was 78% (69/88). The entire sample had a mean AAS score of 16.61, and 36% of participants had poorly controlled disease as expressed by the AECT. The mean quality of life in the entire sample was 30.99 as expressed by the AE-QoL and 0.873 as expressed by the EQ-5D-5L utility value. Utilities dropped by 0.320 points during an angioedema attack. TSQM scores ranged from 66.67 to 75.00 across its four domains. On average, total costs per year incurred €22,764, predominantly existing of HAE-medication costs. Total costs showed substantial variation between patients.

This study describes the entire burden of HAE among Dutch patients comprising disease control, quality of life, treatment satisfaction and societal costs. These results can inform cost-effectiveness analyses which can aid reimbursement decisions for HAE treatments.

Burden of illness

Costs

Hereditary Angioedema

Treatment

angioedema activity score

angioedema control test

angioedema quality of life

iMTA medical consumption questionnaire

iMTA productivity cost questionnaire

treatment satisfaction questionnaire for medication

© 2023 Published by Elsevier Inc. on behalf of the American Academy of Allergy, Asthma & Immunology