A new survey-based study has found that hereditary angioedema (HAE) has a significant impact on reproductive decision-making among patients.

The study, published in the Journal of Allergy and Clinical Immunology: In Practice also found that current knowledge of reproductive options was low among patients with HAE, underscoring the importance of offering genetic counseling to these patients.

“Over one-third of hereditary angioedema patients are hesitant to have children because of their condition,” the authors wrote. “Patients support the availability of reproductive options for hereditary angioedema to prevent the birth of an affected child, including preimplantation genetic testing [PGT].”

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Options for patients with HAE who wish to have children include accepting the 50% chance of HAE inheritance, prenatal diagnosis, adoption, gamete adoption, and PGT.

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To explore patient attitudes and concerns about their reproductive options, the research team conducted a cross-sectional survey on reproductive decision-making with 83 adult patients with HAE at a single center in Amsterdam between December 2020 and April 2021.

The results showed that the presence of HAE had a clear impact on reproductive decisions, with 38% of respondents who wanted children expressing hesitancy about having them. The likelihood of choosing to have children was affected by scores on the Brief Illness Perception Questionnaire and by the perceived risk of having a child with HAE.

Two-thirds of the respondents were not familiar with PGT. This low awareness underscores the importance of genetic counseling for patients of reproductive age with HAE.

The authors caution that selection bias and recall bias are limitations of the study, as is the generalizability of the results, given that they all come from one country and there are significant international differences in terms of reproductive issues and access to medical care.


Fijen LM, Petersen RS, Levi M, et al. Patient perspectives on reproductive options for hereditary angioedema: a cross-sectional survey study. J Allergy Clin Immunol Pract. Published online June 9, 2022. doi:10.1016/j.jaip.2022.05.030