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血友病监测平台的首次体验:弗洛里奥血友病监测平台

First experience of a hemophilia monitoring platform: florio HAEMO.

作者信息

Zapotocka Ester, Batorova Angelika, Bilic Ernest, Boban Ana, Escuriola Ettingshausen Carmen, Faganel Kotnik Barbara, Hrdlickova Radomira, Laguna Pawel, Machal Jan, Nemes Laszlo, Zupan Irena Preloznik, Puras Gediminas, Zombori Marianna

机构信息

Department of Pediatric Hematology/Oncology University Hospital Motol 2nd Faculty of Medicine Charles University Prague Czech Republic.

National Hemophilia Center Department of Hematology and Transfusion Medicine Faculty of Medicine of Comenius University and University Hospital Bratislava Slovakia.

出版信息

Res Pract Thromb Haemost. 2022 Mar 13;6(2):e12685. doi: 10.1002/rth2.12685. eCollection 2022 Feb.

Abstract

BACKGROUND

florio HAEMO is a new hemophilia treatment monitoring application consisting of a patient smartphone application (app) and a web-based dashboard for healthcare professionals, providing several novel features, including activity tracking, wearable connectivity, kids and caregiver mode, and real-time pharmacokinetic factor level estimation.

OBJECTIVES

To assess intuitiveness, ease-of-use, and patient preference of florio HAEMO in Central Europe using a cross-sectional survey.

METHODS

This survey was conducted in six Central European countries between 9 December 2020 and 24 May 2021. The online questionnaire included 17 questions about overall satisfaction, ease-of-use, intuitiveness, and patient preference. Adults or children with hemophilia on regular prophylaxis and using the florio HAEMO app for a minimum of 1 week were invited to complete the online questionnaire by their treating physician.

RESULTS

Sixty-six participants took part in the survey. The median duration for all respondents using the florio HAEMO app was 3 to 4 weeks. Overall, 89.4% of users reported being very satisfied or rather satisfied after using florio HAEMO. Of the 23 respondents who had switched from another hemophilia app, 87.0% indicated that they strongly preferred or preferred using florio HAEMO. Most florio HAEMO users reported that the app was very easy or rather easy to use (97.0%) and intuitive (94.0%). florio HAEMO had a positive impact on daily living, with 78.8% of users reporting that the app was very important or rather important to them.

CONCLUSIONS

This survey suggests that florio HAEMO is an easy-to-use and intuitive app to assist self-management of home prophylaxis.

摘要

背景

Florio HAEMO是一款新型血友病治疗监测应用程序,由患者智能手机应用程序(app)和供医疗保健专业人员使用的基于网络的仪表板组成,具有多项新颖功能,包括活动跟踪、可穿戴设备连接、儿童及护理人员模式以及实时药代动力学因子水平估计。

目的

通过横断面调查评估Florio HAEMO在中欧地区的直观性、易用性和患者偏好。

方法

该调查于2020年12月9日至2021年5月24日在六个中欧国家进行。在线问卷包含17个关于总体满意度、易用性、直观性和患者偏好的问题。接受定期预防治疗且使用Florio HAEMO应用程序至少1周的血友病成人或儿童,由其主治医生邀请完成在线问卷。

结果

66名参与者参与了调查。所有受访者使用Florio HAEMO应用程序的中位时长为3至4周。总体而言,89.4%的用户表示使用Florio HAEMO后非常满意或比较满意。在从另一款血友病应用程序切换过来的23名受访者中,87.0%表示他们强烈偏好或更喜欢使用Florio HAEMO。大多数Florio HAEMO用户表示该应用程序非常容易或比较容易使用(97.0%)且直观(94.0%)。Florio HAEMO对日常生活有积极影响,78.8%的用户表示该应用程序对他们非常重要或比较重要。

结论

本次调查表明,Florio HAEMO是一款易于使用且直观的应用程序,有助于家庭预防的自我管理。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/6067/8918679/02998693c894/RTH2-6-e12685-g004.jpg

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