The patient experience of hereditary angioedema: findings from a racially diverse sample of adult patients.

backgroundHereditary angioedema (HAE) is a rare, autosomal dominant disorder causing swelling attacks in various parts of the body, resulting in symptoms and impacts on health-related quality of life (HRQoL). The symptoms and impacts on HRQoL have been well-documented; however, they are based on samples of participants who are primarily White. The objective of this qualitative interview study was to explore the patient experience of HAE among a racially diverse sample of adults.

methodsThis was a non-interventional, qualitative study that involved adults with HAE. A purposive sampling strategy was used to recruit 16 adults with HAE, with a target of at least 8 who were non-White. All participants completed a one-time, one-on-one, 60-minute, remote interview. Interview data were coded and analyzed using qualitative data analysis software.

resultsSixteen adults took part in the study, with three-quarters of the sample self-identifying as non-White. Participants described experiencing common symptoms of HAE attacks: swelling, general discomfort, vomiting, nausea, fatigue, diarrhea, rash (or change in skin), feeling lightheaded, tingling sensation, and itching. They experienced attacks in various bodily locations, with all reporting abdominal attacks, and most reporting attacks in the feet, hands, and face. Of these, laryngeal, abdominal, and facial attacks were generally considered more severe. Participants reported impacts associated with HAE and HAE attacks across 7 domains of HRQoL: emotional, physical, social, and cognitive functioning; work or school; sleep-related problems; and finances. They also identified ways in which some attack triggers, namely food-related triggers and attacks triggered by injury or repeated physical activity, impacted HRQoL. Overall, participants reported satisfaction with both current prophylactic and acute treatments.

conclusionTo understand the patient experience of any health condition, it is essential that the experiences of patients from diverse backgrounds are included. Findings from this qualitative study demonstrate that key experiences and impacts of HAE in a diverse sample of adults was similar to that described in previously published studies with predominantly White patient samples. This addresses a critical research gap to support the development of measurement strategies that are inclusive of patient experiences, including impacts on HRQoL, in diverse populations of patients with HAE. CLINICAL TRIAL NUMBER: Not applicable.