The utility of shared decision making in the management of hereditary angioedema

Background: Hereditary angioedema (HAE) is a complex disorder with a wide array of treatment options. Shared decision-making (SDM) should be used to ensure that patients are choosing their best treatment option. The goal was to develop and psychometrically test a brief instrument for assessing the patient's perspective of the SDM process during his or her clinical encounters with an HAE specialist/allergist. Method: We hypothesized that SDM could be used effectively to help patients in their choice of therapy for HAE. Ten HAE treating physicians from the United States with a total of 50 patients with HAE used SDM to help patients choose the best prophylactic therapies (oral kallikrein inhibitor, androgens, subcutaneous C1 inhibitor replacement therapy, intravenous C1 inhibitor replacement therapy, monoclonal antibody kallikrein inhibitor) for their HAE and then completed surveys to analyze the effectiveness of the implementation of SDM as a quality indicator in health services assessment. Results: The congruence of answers between the physicians and the patients was then analyzed; 90% of the patient-physician pairs agreed that the advantages and disadvantages of the treatment options were precisely explained; 92% of the patient-physician pairs agreed that the physician helped them understand all the information and that the physician asked them which treatment option they preferred; 88% of the pairs agreed that the different treatment options were thoroughly weighed and 92% of the pairs felt that they selected a treatment option together. Conclusion: In summary, SDM is being implemented by treating physicians to determine the best management options for their patients with HAE.