The influence of individualized treatment on the quality of life (QoL) in 100 patients with Hereditary Angioedema (HAE C1-INH)
Saturday, March 3, 2018
South Hall A2 (Convention Center)
Inmaculada Martinez Saguer, Carmen Escuriola Ettingshausen, Zeynep Gutowski, Richard Linde

Hereditary angioedema due to C1-inhibitor deficiency (HAE-C1-INH) is a rare autosomal dominant inherited disease. The recurrent symptoms are subcutaneous edema and colic-like abdominal pain. Laryngeal edema is rare, but life-threatening if untreated. One of the major goals in the management of HAE-C1-INH patients is the immediate treatment of attacks which can be achieved by self-infusion /-treatment at home. With the ability to control attacks immediately but with potential mental stress caused by the intravenous self-treatment in contrast to subcutan treatment. These different therapeutic approaches may have influence on QoL.


A patient questionnaire was developed in order to evaluate QoL of the patients, type of treatment and how they deal with their current therapeutic approach, and the potential implementation of modern communication tools to support home treatment. The questionnaire was distributed to the patients during their routine visits after giving informed consent.


A total of100 patients with HAE-C1-INH type I/ II, age ≥ 18 years were enrolled in this study: 68 females, 32 males aged 18 - 79 years. 48% of our patients used more than one treatment option dependent on their clinical/personal situation. Patients using self-treatment at home show a higher QoL. One of the major patient´s treatment preferences was the possibility to perform home-treatment using modern communication channels (e.g. 24/7/365- phone call, e-mail, what´s app).


Our data indicate a positive influence of self-treatment at home on QoL and the need for the implementation of communication platforms using modern communication channels to support individualized home treatment in C1-INH-HAE patients.