The Impact of the Heredi̇tary Angi̇oedema Attack Di̇ary Mobi̇le Appli̇cati̇on on Quali̇ty of Li̇fe and Treatment Adherence

Introduction : Hereditary angioedema with C1 inhibitor deficiency (HAE-C1INH) is a rare autosomal dominant inherited disease characterized by asymmetrical edema of the skin and mucosa without urticaria. Managing HAE involves improving treatment adherence and quality of life, which is vital for patients. Mobile applications in healthcare provide significant conveniences in the management and treatment of diseases. Objective : This experimental study, planned with application and control groups, aims to investigate the impact of the 'Hereditary Angioedema Attack Diary' mobile application (HAE-MOBILE) on acute attack treatment adherence with icatibant and quality of life among HAE patients. Methods : Seventy-six HAE-C1INH patients (HAE-MOBILE group; n: 38, control group; n: 38) receiving Icatibant 30 mg/3 ml SC were included in the study by the Department of Internal Medicine, Division of Allergy and Clinical Immunology, Ege University Faculty of Medicine. The HAE Attack Diary Mobile Application was installed on the phones of patients in the application group, and they were required to use the application for 3 months. The SF-36 Quality of Life Scale, Morisky Medication Adherence Scale, Mobile Learning Readiness Scale, Mobile Application Evaluation, Satisfaction Survey, and Written Education Material Appropriateness Evaluation scales were applied to both groups and repeated after 3 months. The control group was only given an informational brochure about HAE. Results : The HAE-MOBILE group evaluated the ease of use of the application as good (39.06%) and very good (29.69%). Additionally, they noted the application's facilitating aspects in attack intervals, medication tracking, recording attacks, sharing with doctors, learning unknown aspects of the disease, and accessibility. Data analysis revealed that the application group's scores on the social functioning subscale and general health perception of the SF-36 quality of life scale were better (respectively t=-2.099, p=0.039 and t=-2.306, p=0.027). In the control group, no statistically significant difference was observed in the mean subscale scores of the SF-36 quality of life scale. Regarding treatment adherence, no statistically significant difference was found between the pre-test and post-test mean scores measured by the Morisky medication adherence scale in the application group. However, in the control group, a statistically significant difference was observed in the pre-test and post-test scores of the Morisky medication adherence scale in the direction of a decrease (t=2.452, p=0.019). Conclusion : The findings indicate that the 'Hereditary Angioedema Attack Diary' mobile application developed for HAE patients has a positive impact on quality of life, particularly in terms of social functioning and general health perception. However, the application did not have a significant effect on treatment adherence. Further studies are needed to explore additional strategies to enhance treatment adherence among HAE patients.