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START THE Experience
How does your attack journey experience compare?
Answer 5 questions to see if your experience is similar to those in the HAE Attack Journey Survey.
START THE ExperienceHow do people living with HAE prepare for and treat attacks?
THE HAE ATTACK JOURNEY SURVEYED PEOPLE LIVING WITH HAE WITH THE GOAL OF UNDERSTANDING:
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How people living with HAE plan for an attack and make decisions about treatment
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How attacks impact quality of life
There are times when people living with HAE delay on-demand treatment or decide not to treat an HAE attack. The HAE Attack Journey Survey has revealed that many people living with HAE find it difficult to carry their on-demand treatment and struggle with the anxiety of whether to treat when they recognise an attack. Lack of privacy required to administer medication, preferring to treat at home, and fear of injection or pain of medication are 3 of the most common reasons for delaying treatment.
The HAE Attack Journey survey included 107 people living with HAE
-
54/107
treat with
prophylaxis
53/107
treat with
on-demand
only -
21 male and
86 female
participants -
56 people who were
<40 years old
and 51 who were
≥40 years old
Learn more about this survey
The HAE Attack Journey Survey was conducted by KalVista Pharmaceuticals in partnership with the HAE community to better understand how people living with HAE plan for an attack, make decisions about on-demand treatment, and how attacks impact their quality of life. This survey was based on the findings of an earlier pilot survey (N=32), which revealed that the majority of people living with HAE continue to experience a prolonged attack journey, despite advances in treatment.
The survey was conducted online from April to October 2022 and asked 107 members of the Hereditary Angioedema Association questions about HAE attacks and their current on-demand treatment experience.
THERE WERE 54 PEOPLE ON PROPHYLAXIS AND 53 TAKING ON-DEMAND ONLY
*For Firazyr, 44 people were on prophylaxis and on-demand, and 40 were taking on-demand only; for Ruconest, 3 people were on prophylaxis and on-demand, and 10 were taking on-demand only; for Berinert, 6 people were on prophylaxis and on-demand, and 3 were taking on-demand only; for Kalbitor, 1 person was on prophylaxis and on-demand, and 0 were taking on-demand only. Cinryze, Firazyr, Kalbitor, and Takhzyro are registered trademarks of Takeda or its affiliates. Berinert and Haegarda are registered trademarks of CSL Behring GmbH. Orladeyo is a registered trademark of BioCryst Pharmaceuticals, Inc. Ruconest is a registered trademark of Pharming Intellectual Property, B.V.
The HAE Attack Journey Survey showed that people living with HAE:
-
1Continue to have attacks even
if they’re taking prophylaxis -
2Go through a complex on-demand,
decision-making process that
results in delayed treatment -
3Have prolonged attacks and longer
recovery, resulting in significant
physical and psychological burden
CLOSE SURVEY DETAILS
Review the HAE Attack Journey Survey results
Attack preparation:
People living with HAE miss opportunities to treat attacks early
ATTACK RECOGNITION:
PEOPLE LIVING WITH HAE CAN CONSISTENTLY RECOGNISE THE ONSET OF THEIR ATTACKS
Decision-making:
DESPITE RECOGNISING THE
START OF AN HAE ATTACK, NEARLY ALL RESPONDENTS DELAY
ON-DEMAND TREATMENT
RESOLUTION:
DELAYING ON-DEMAND TREATMENT IMPACTED ATTACK SEVERITY AND RECOVERY TIME
Attack preparation
title="Avoiding attack triggers statistic.">
Attack recognition
title="Sensations and feelings of HAE attack onset infographic">
title="Feelings during onset of HAE attack">
Decision-making
title="Delaying injectable on-demand treatment statistic">
Resolution
title="People living with HAE recognizing early treatment benefits statistic">
title="3 out of 4 report delayed treatment means a more severe HAE attack">
title="Attacks resolution after delays in on-demand treatment statistic">
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