Nearly 1 in 5 HAE patients skip treating recent attacks, survey finds
Most participants said they would prefer oral medication to injections
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Nearly one in five people with hereditary angioedema (HAE) left their latest swelling attack untreated, most often because it seemed mild or did not limit their activities, an international survey has found.
Preventive treatment brought its own challenges, as forgetting doses and difficulty fitting medication into daily routines were common reasons for not taking it as prescribed. Although most patients were satisfied with their therapies, injection-related concerns remained, and 84% of those asked said they would prefer an on-demand treatment taken by mouth.
“This analysis increases our understanding of the lived experience of HAE and helps address the remaining gaps in treatment satisfaction and adherence within the HAE community,” researchers wrote.
The study, “Patient Experience with Treatment of HAE Attacks: Results from a Real-World Survey of Physicians and Their Patients,” was published in Advances in Therapy.
Guidelines urge considering every attack for on-demand treatment
HAE is caused by genetic mutations that lead to excessive production of bradykinin, a signaling molecule that causes blood vessels to widen and leak fluid into surrounding tissues. This triggers unpredictable swelling attacks that can affect the abdomen, limbs, face, and airways.
Treatment includes on-demand medication to bring attacks under control and long-term preventive therapy to reduce their frequency and severity. Most approved treatments are given by injections under the skin or into a vein, although oral options are available in both categories.
Guidelines recommend considering every attack for on-demand treatment and treating as early as possible. People taking preventive medication should also still have on-demand treatment available for breakthrough attacks.
But how people use these treatments outside clinical trials and what gets in the way of following treatment recommendations are less well understood.
To get a clearer picture, researchers analyzed data from the Adelphi Real World HAE Disease Specific Programme, a survey conducted from January 2023 to January 2024 across France, Germany, Italy, Spain, the U.K., the U.S., and Japan.
Mildness of attack top reason for not treating it
A total of 225 physicians provided information from medical records and their clinical assessments for 1,131 people with HAE, ages 3 to 82. Of these patients, 279 adults independently completed questionnaires describing their own experiences.
Patients described by physicians had a mean age of 34.8, and 54% were female. The adults who completed their own questionnaires had a mean age of 33.8, and 52% were female. One or two attacks in the previous year were reported by physicians for 48% of patients and by 51% of patients themselves.
Still, attacks were not always treated.
Among patients answering the question themselves, 82% said they had treated their most recent attack, and 18% had not. Of those giving a reason for leaving an attack untreated, 59% said it seemed mild or did not limit their activities. Physicians reported a similar pattern, citing that explanation for 54% of patients with a recorded reason for not treating their latest attack.
Patients who provided timing information waited an average of 22 minutes before treating their latest attack, although waiting times varied widely. Separately, physicians reported that symptoms began improving a mean of 95.3 minutes after treatment.
The survey also suggested some patients might not have on-demand medication available. Physicians reported that 24% were prescribed preventive treatment alone, 34% on-demand treatment alone, and 38% both, while 4% were prescribed neither.
Because people taking preventive therapy should still have medication to treat attacks, the researchers said these findings could point to gaps in care. However, errors in the collection of treatment information might also explain the pattern.
Forgetting doses most common reason not taking meds as prescribed
Preventive treatment presented a different set of challenges. Among those giving reasons for not taking it as prescribed, forgetting doses was the most common explanation: physicians cited it for 45% of patients, and 51% of patient respondents reported it themselves. About 27% in both groups said treatment was difficult to fit into daily routines.
How treatment was given also mattered. Among patients answering questions about unmet needs with preventive therapy, 12% disliked injections and 11% experienced pain, bruising, or burning when injecting. Physicians likewise identified the way medication was given and overly frequent dosing as areas needing improvement.
Similar concerns emerged for on-demand treatment: 19% of patient respondents disliked injections, 19% reported pain, bruising, or burning, and 17% disliked injecting in public. Given the choice, 84% said they would prefer to take their on-demand treatment by mouth.
Gaining a better understanding of factors influencing physician and patient behaviors may help further raise awareness about these unmet needs and patient expectations.
These difficulties remained even though most patients were satisfied with treatment. Among those answering the relevant questions, 92% were satisfied or completely satisfied with preventive medication, and 90% with on-demand medication.
The researchers said improving HAE care will require treatments that combine effectiveness, good tolerability, and ease of use, alongside better clinician education about treatment recommendations. Understanding why patients leave attacks untreated or miss preventive doses could also help doctors address their needs.
“Gaining a better understanding of factors influencing physician and patient behaviors may help further raise awareness about these unmet needs and patient expectations,” the researchers wrote.
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