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Open Access Shared decision-making in the management of hereditary angioedema: An analysis of patient and physician perspectives


Hereditary angioedema (HAE) is a rare genetic disorder characterized by recurrent, localized episodes of edema. Current treatment guidelines highlight the importance of shared decision-making (SDM) during implementation of HAE management plans.


To determine what constitutes a successful SDM approach in HAE management.


Qualitative telephone interviews, which lasted ∼1 hour, were conducted with four HAE physicians and four patients from the APeX-S trial. The physicians were asked to describe the structure and/or content of typical HAE prophylaxis consultations and factors to consider when selecting medications for long-term treatment. Insights from these interviews were used to develop an SDM process diagram. The patients were interviewed to assess how closely the diagram fit their perspectives on the HAE consultation and their involvement in decisions that concerned their care. Interview transcripts were assessed by the interviewer to determine the degree of SDM involvement in each consultation by using qualitative criteria from the literature.


Two physicians followed a high-SDM format, and one physician used a “blended” approach. The fourth physician followed a standard (low SDM) format. A successful SDM approach was found to require pre-visit planning, a commitment on behalf of the physician to use SDM methods to learn more about the patient, and empowerment of the patient to reflect on and vocalize his or her preferences and/or needs. Patients engaged in SDM were more likely to proactively request a treatment switch.


The adoption of validated HAE-specific treatment decision aids, as well as measures to change the mindsets of patients and physicians, may facilitate successful implementation of SDM in HAE.

Clinical Trial Registration: The APeX-S trial was registered with (NCT03472040).

Keywords: APeX-S trial; Shared decision making; hereditary angioedema; patient autonomy; patient perspectives; physician perspectives; prophylaxis; qualitative interviews; quality-of-life; treatment decision aids

Document Type: Research Article

Affiliations: 1: From the Division of Rheumatology, Allergy, and Immunology, Department of Medicine, University of California, San Diego, La Jolla, California; 2: Clinical Score, Chadds Ford, Pennsylvania; 3: BioCryst Pharmaceuticals, Inc., Durham, North Carolina; and 4: Allergy Section, Division of Immunology, Department of Internal Medicine, College of Medicine, University of Cincinnati, Cincinnati, Ohio

Publication date: September 25, 2022

This article was made available online on July 12, 2022 as a Fast Track article with title: "Shared decision-making in the management of hereditary angioedema: An analysis of patient and physician perspectives".

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  • Allergy and Asthma Proceedings is a peer reviewed publication dedicated to distributing timely scientific research regarding advancements in the knowledge and practice of allergy, asthma and immunology. Its primary readership consists of allergists and pulmonologists.

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