Survey-Defined Patient Experiences With Aspirin-Exacerbated Respiratory Disease.

Abstract

Aspirin-exacerbated respiratory disease (AERD) is a chronic illness of progressive recurrent sinus disease with nasal polyps and asthma. No population-based comprehensive surveys of patients with AERD have been carried out to assess specific quality-of-life impact or perceptions of treatment benefit. This survey analyzed perceptions and quality of life in those living with AERD and queried patient observations of treatment effectiveness. The survey assessed whether dietary and nutritional support was used to manage AERD, and if so, whether there was a perceived benefit. This survey was publicized through clinics that treat patients with AERD, Web sites, and online blogs. Results are reported for 190 patients. Most subjects reported an adverse effect of AERD on quality of life. Chronic nasal symptoms followed by decreased sense of smell were reported to have the greatest impact on quality of life—in 81 (43%) and 74 (39%), respectively. Those who lost their ability to smell (n = 65; 34%) reported that they missed the enjoyment of food and eating the most. A minority indicated that a combination of medications (aspirin, leukotriene receptor antagonist, zileuton, or omalizumab) was more effective than 1 alone. Of those surveyed, 120 (63%) respondents felt that components of their diet contributed to their disease and 147 (77%) respondents reported having reactions after alcohol consumption. Patients with AERD live with frustration and report a poor quality of life in spite of several pharmacologic treatments including aspirin desensitization followed by daily aspirin. Despite ongoing medical therapy, the burden of disease in AERD remains high.