Optimal Management of Hereditary Angioedema: Shared Decision-Making

Aleena Banerji,¹ John Anderson,² Douglas T Johnston<sup>3

1</sup>Division of Rheumatology, Allergy and Immunology, Massachusetts General Hospital, Boston, MA, USA; ²Clinical Research Center of Alabama, Birmingham, AL, USA; ³Asthma and Allergy Specialists, Charlotte, NC, USA

Correspondence: Aleena Banerji 6 Aaron Road, Lexington, MA, 02421, USA
Tel +1-617-308-5975
Fax +1-617-724-0239
Email ABANERJI@mgh.harvard.edu

Abstract: All patients with hereditary angioedema (HAE) must have access to on-demand therapy to treat attacks and may benefit from prophylactic therapy to reduce the attack frequency. Treatment decisions should be individualized, based on patient preferences and needs. One method for facilitating individualized therapy is shared decision-making (SDM), a widely used methodology for making treatment decisions among multiple therapeutic options. We propose a three-phase “ 3D” model (Discover, Discuss, Decide) for SDM in HAE. The Discover phase focuses on improving the physician’s understanding of the patient’s needs and understanding of the available therapeutic choices. The Discuss phase considers the alternatives, allowing a collaborative, informed treatment selection in the Decision phase. The 3D model is an ongoing, iterative process based on the patient’s changing needs and response to therapy. Uncovering the patient’s therapy goals through appropriate questions during these phases can help uncover relevant information for treatment selection information. SDM based on the 3D model can be a beneficial tool for optimizing therapy in HAE.

Keywords: prophylaxis, hereditary angioedema, individualized therapy, patient preference, on-demand therapy, adherence, quality of life, shared decision-making