Empowering People With Haemophilia: A Mobile Solution for Self-Management

IF 3.3 Q3 ENGINEERING, BIOMEDICAL Healthcare Technology Letters Pub Date : 2026-02-18 DOI:10.1049/htl2.70070

Arezou Azizi Alavijeh, Khadijeh Moulaei, Mohammad Mehdi Ghaemi, Kambiz Bahaadinbeigy

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Abstract

Background and Aims

Haemophilia is a congenital bleeding disorder requiring extensive self-management. Mobile applications can support these processes. This study aimed to design and evaluate a mobile application to facilitate self-management in persons with haemophilia.

Methods

The study was conducted in two phases. First, a literature review was performed in PubMed, Web of Science, and Scopus, and searches were made in Google Play, Apple Store, and the websites of the World Federation of Hemophilia and Hemophilia Federation of America to identify information-educational needs and necessary capabilities for app design. A questionnaire based on these needs was then provided to physicians and patients for approval. In the second phase, the application prototype was designed according to the approved information-educational needs and necessary capabilities and evaluated for usability using the standard Questionnaire for User Interface Satisfaction with 17 patients. Data were analysed using SPSS 20.

Results

Sixty-two information-educational needs and capabilities with scores above 50% were included in the design. The designed application can provide the conditions for recording demographic information, medical history, treatment information, bleeding information, and injuries and accidents and provide the education on self-management for patients. Moreover, it has the capabilities to set various reminders (taking medication, rehabilitation-physical activities, and appointments with the therapist), set the treatment plan, send reports to the therapist, communicate with other persons with haemophilia and therapists, and record notes. Patients evaluated the application's usability at a “good” level.

Conclusion

The haemophilia self-management app can enhance patients’ quality of life by addressing their educational needs and supporting self-management.

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赋予血友病患者权力：自我管理的移动解决方案。

背景和目的：血友病是一种先天性出血性疾病，需要广泛的自我管理。移动应用程序可以支持这些过程。本研究旨在设计和评估一个移动应用程序，以促进血友病患者的自我管理。方法：研究分两期进行。首先，在PubMed、Web of Science和Scopus中进行文献综述，并在谷歌Play、Apple Store以及世界血友病联合会和美国血友病联合会的网站进行搜索，以确定信息教育需求和应用程序设计所需的必要功能。然后将基于这些需求的调查问卷提供给医生和患者以供批准。在第二阶段，根据批准的信息教育需求和必要的功能设计应用程序原型，并使用标准的用户界面满意度问卷对17名患者进行可用性评估。数据采用SPSS 20进行分析。结果：设计纳入了62项得分在50%以上的信息教育需求和能力。设计的应用程序可以提供记录人口统计信息、病史、治疗信息、出血信息、伤害和事故信息的条件，并为患者提供自我管理的教育。此外，它还具有设置各种提醒（服药、康复-身体活动和与治疗师的预约）、设置治疗计划、向治疗师发送报告、与其他血友病患者和治疗师交流以及记录笔记的功能。患者对应用程序的可用性评价为“良好”。结论：血友病自我管理app通过满足患者的教育需求和支持自我管理，可以提高患者的生活质量。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Healthcare Technology Letters Health Professions-Health Information Management

CiteScore

6.10

自引率

4.80%

发文量

审稿时长

22 weeks

期刊介绍： Healthcare Technology Letters aims to bring together an audience of biomedical and electrical engineers, physical and computer scientists, and mathematicians to enable the exchange of the latest ideas and advances through rapid online publication of original healthcare technology research. Major themes of the journal include (but are not limited to): Major technological/methodological areas: Biomedical signal processing Biomedical imaging and image processing Bioinstrumentation (sensors, wearable technologies, etc) Biomedical informatics Major application areas: Cardiovascular and respiratory systems engineering Neural engineering, neuromuscular systems Rehabilitation engineering Bio-robotics, surgical planning and biomechanics Therapeutic and diagnostic systems, devices and technologies Clinical engineering Healthcare information systems, telemedicine, mHealth.