On-Line Monitoring Tool for Recommended Data Collection of Angioedema Attacks in Patients with Hereditary Angioedema
Sunday, March 6, 2016: 3:00 PM
Theatre, Room 411 (Convention Center)
Jaclyn Bjelac, MD, ,

In 2013 The US Hereditary Angioedema Association Medical Advisory Board published recommendations for management of Hereditary Angioedema due to C1 Inhibitor Deficiency. We hypothesized that use of self -administered medications and outcome of treatment are not readily reported to the physician.


We piloted an on-line monthly questionnaire to collect information regarding attacks and outcomes of treatment among 18 subjects with laboratory confirmed Hereditary Angioedema Type 1 from August 2014-August 2015. The monthly questionnaire was constructed using REDCap - a secure, web-based application for online surveys. Subjects reported angioedema attacks, locations, prodrome, trigger, and severity.  If on-demand therapy was given, outcome was recorded.


Eighteen subjects completed the monthly questionnaire if an attack had occurred. Key findings included presence of prodrome among 76.5% of the subjects, yet 29.4% waited >4 hours to treat an attack. If on-demand therapy was used, 47.1% reported relief in 2-4 hours, 40% reported “medication not effective” with 100% reporting “NO” to question “was your physician contacted?”


The data supports our hypothesis that our patient population was managing their disease with no direct communication with the physician despite 88.9% reporting use of therapy and 40% reporting “medication not effective”.

An on-line questionnaire can be an effective tool to increase communication with the physician and allow treatment plan adjustments for better outcomes.