Access to preventive treatment and education of patient families are the main priorities identified by the latest HAE Junior’s patient survey

In spring 2021, HAE Junior launched its second patient survey, this time focusing on "Living with HAE during the COVID-19 pandemic". The survey is unique as it compares patient experience and quality of life priorities from the perspective of adult patients vs. parents of pediatric patients with HAE. This year, a total of 40 adult patients together with 13 parents of pediatric patients diagnosed with HAE from the Czech Republic participated.

According to the output analysis, one-fifth of adult respondents with HAE and two out of 13 children were infected with COVID-19 in the period from March 2020 to May 2021. None of them needed to be hospitalized. Many HAE patients participating in the survey mentioned greater concerns about their health during the pandemic. In addition, some patients experienced more HAE symptoms (5 adults, 1 child), with 1 respondent in each group reporting more severe forms of HAE attacks. 

According to the survey, only a third of adult patients experienced a change in HAE treatment. These patients showed higher preference for subcutaneous acute treatment, initiated prophylaxis, treated edema earlier than before or omitted acute treatment. Adult patients continue to rely more often on subcutaneous acute treatment and use prophylactic treatment compared to children. In 5 of 13 children and adolescents, there was a change in treatment during the pandemic, with a preference for subcutaneous acute treatment or new prophylaxis. Pediatric patients continue to primarily treat their HAE swellings with intravenous medication and have significantly more limited preventive treatment options as well as experience with it.

As for the quality of life patient priorities, prophylaxis remains the main priority for adult patients, while parents of pediatric patients view as a priority the need for patient families education. In the context of the pandemic, the second priority for adult patients was the possibility to have the prescribed HAE medication delivered at a nearby pharmacy / home delivery. In the pediatric group, there was a growing interest in preventive treatment and in home therapy for the treatment of acute HAE symptoms.

More information on the results of the survey are to be presented in Czech on November 27, 2021, as a part of the Virtual Education Seminar for PID and HAE patients, organized by MeDitorial agency. HAE Junior organization warmly thanks all the patients and parents of children with HAE who participated in the project, as well as all the doctors who supported it.