Facilitating self-infused intravenous therapy among hereditary angioedema patients in Romania
Year: 2026
Type: article
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.
Source: Medicine and Pharmacy Reports
DOI: 10.15386/mpr-2969
Language: English
Subfield: Hematology
Field: Medicine
Domain: Health Sciences
Open Access status: diamond
OpenAlex ID: W7212028920