An Observational Study to Understand Patient and Physician Communication in Hereditary Angioedema (HAE)
Saturday, March 3, 2018
South Hall A2 (Convention Center)
Gagan Jain, Lauren Walter, Carolyn Reed, Pattie O’Donnell

HAE is a rare, genetic disease that can cause recurrent angioedema attacks, significantly affecting patients’ quality of life. Communication dynamics for patients and physicians regarding HAE and its overall impact was assessed in the US.


Following an Institutional Review Board-approved protocol, four sources of communication data were obtained, namely in-office conversations between adult patients with HAE and physicians, follow-up dictations with physicians, tele-depth interviews with patients and physicians, and publically available social media posts from Jan 2015 – May 2017. Patient-physician dialogue dynamics were qualitatively assessed. Key communication elements and communication gaps were identified.


Twenty five in-office conversations, 14 follow-up physician dictations and 17 tele-depth interviews with patients and physicians were collected. In interviews and online forums, patients frequently described the multifaceted burden of HAE whereas their physicians’ conversations focused primarily on symptom frequency and severity. Patients highlighted difficulties they experience with HAE using repetition, minimizers, and metaphors, and utilized different descriptors for attacks that varied by swelling locations. In general, in-office conversations were patient-driven and lexicon from both parties centered on “episodes” and “swelling”. Physicians reported inconsistences in quality of life discussions during visits. Physicians used intensifiers to emphasize necessity of having access to rescue medications, whereas prophylactic treatments were positioned as an option for patients with frequent episodes and laryngeal attacks. Patients shared different dimensions of their burden depending upon type of communication forum.


The study findings show that the full impact of HAE is not consistently communicated between patients and physicians, possibly affecting their treatment plan.