Facilitating self-infused intravenous therapy among hereditary angioedema patients in Romania

Abstract

Background

Hereditary angioedema (HAE) is a rare, potentially life-threatening disease characterized by unpredictable swelling attacks. Early administration of acute treatment is essential, with self-administration playing a key role. This study evaluated the acceptance of intravenous self-administration and the effectiveness of a structured training program among patients with HAE in Romania.

Methods

Two face-to-face training sessions were organized for adults and adolescents with HAE from Romania, as well as for parents of adolescent patients registered in the national HAE Registry. Each session included a theoretical component followed by hands-on training using an artificial arm. Participants completed pre- and post-training questionnaires developed by HAE experts to assess knowledge, experience, skills, and confidence related to the intravenous self-administration.

Results

Of the 93 patients informed about the training, 38 (41%) expressed interest in the first session and 13 (14%) in the second. A total of 24 individuals ultimately participated, with a mean age of 40.8 years. The majority were adults (23, 95.8%), female (18, 75%), and diagnosed with HAE type 1 (23, 95.8%).

Twenty participants (83.3%) rated the training as extremely useful. The practice resulted in significant improvements in self-reported knowledge, experience, and confidence regarding intravenous self-administration, with large effect sizes across all domains. Sixteen patients (66.7%) reported willingness to try this type of self-administration, whereas two (8.3%) indicated they would not prefer this route, and five (20.8%) stated they would not choose it even if administered by a healthcare professional. Notably, during the second session, none of the participants was willing to attempt the practical component.

Conclusions

These findings suggest that while patients generally perceive home treatment as beneficial, the intravenous route remains a significant barrier and may be a suitable option only for selected HAE patients. While structured training improves cognitive and affective domains, continued practical reinforcement is required to ensure consistent technical proficiency.