Current state of hereditary angioedema management: A patient survey

Abstract

ABSTRACT

Hereditary angioedema from the patient's perspective: A follow-up patient survey

“…Thus, we did not expect bias concerning missing responses from respondents. Comparisons of demographics, burden of disease, satisfaction with care, and treatment options between patients with HAE-C1INH and patients with HAE-nlC1INH, as well as between patients with HAE in 2013 3 and 2015, were performed by using 2 tests. A two-sided p value of Ͻ0.05 was considered to be significant.…”

“…Among the patients with HAE-C1INH who received prophylaxis, 93% received treatment in their home, either by self or family administration of medication, or via home health care visits; these results were comparable with the 2013 information. 3 More than one-third (39%) reported that they were "very satisfied" with their current prophylactic treatment; 22% were "moderately satisfied," 6% were "mildly satisfied," and 2% reported they were "minimally satisfied" with current prophylaxis (Table 2). Among the patients with HAE-C1INH who received prophylaxis, 20% reported breakthrough attacks at least once per week, 31% reported breakthrough attacks one to three times per month, 15% reported breakthrough attacks once every 2-3 months, and 34% reported breakthrough attacks fewer than once every 6 months (Fig 4).…”

“…3 We learned that the majority of patients had access to effective on-demand treatment options at home, with an emergency plan of care in place. This represented significant progress compared with an historical lack of effective HAE acute therapy in the United States and underscored the impact of recent clinical advances and publications in the HAE field at that time.…”

Insights, strategies, asthma and allergy risk factors, and the allergist/immunologist: Challenges to be met and promises to keep!

“…[12][13][14][15][16][17][18][19][20][21][22][23][24][25][26][27] Abdominal symptoms of hereditary angioedema typically mimic numerous abdominal emergencies and may delay the correct diagnosis and inappropriate treatments. Ucar et al 28 report on the difficulties experienced by patients with hereditary angioedema in Turkish emergency departments, which is representative of the unmet needs reported globally.…”

Disorders for which the allergist-immunologist is particularly well-qualified to treat

“…24 Using patient surveys, their analysis reveals that despite widespread patient access to on demand and prophylactic treatment options, a significant burden of the disease persists even in treated patients.…”