engleski

First experience of a hemophilia monitoring platform: florio HAEMO

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 2 of 9 | ZAPOTOCKA et al. Essentials • florio® HAEMO is a new hemophilia monitoring platform for adults, children and caregivers. • A survey in Central Europe assessed intuitiveness, ease-of-use and preference of florio HAEMO. • Most respondents reported florio HAEMO as intuitive, easy to use and preferred. • The survey suggests that florio HAEMO can support families with home prophylaxis for hemophilia. 1 | INTRODUCTION Today, prophylactic self-infusion of factor concentrate in the home setting is the standard of care for most people with hemophilia.1 Patients or caregivers have traditionally written a paper diary to help track home infusions and bleeding episodes, which the treating clinician checks during a biannual clinic visit.2 Poor adherence and delays in addressing medication issues are inherent challenges with paper diaries.2 Electronic documentation tools such as handheld devices have been developed over the years to help address these issues, which enable the treating physician to more closely monitor the patient, leading to better care outcomes, faster resolution of medication issues, and improved adherence.2-5 More recent studies have shown that mobile Health (mHealth or telemedicine) applications (apps) that collect data through mobile/wearable devices to trigger real-time interventions have greater potential to optimize care of people with hemophilia.5 Several smartphone apps offering a secure patient recording system are available to help people with hemophilia log infusions of factor replacement products, record bleeds, and track remaining stock (e.g., HaemoAssist 2, Haemtrack, Smart Medication, myPKFiT®, myWAPPS, MicroHealth, myABDR, myCBDR) and, the most recently introduced app, florio HAEMO.3, 5-11 We report the first user experience of florio HAEMO, based on the results of a crosssectional survey designed to assess the app's intuitiveness, easeof-use, and patient preference for people with hemophilia and their caregivers across six Central European countries. 1.1 | florio HAEMO (and florio HAEMO Kids) florio HAEMO (Florio GmbH, Munich, Germany ; https://floriohaemo.com/) is a new hemophilia monitoring application consisting of a patient smartphone app and a web-based dashboard for healthcare professionals. The florio HAEMO patient app provides several novel features compared with some existing apps, including the ability to report on physical activities, pain in the absence of bleeds, upload photographs and information related to bleeds and queries, monitor wellbeing, plus an option to obtain data from a wearable device to enhance activity tracking. In contrast to some available apps, florio HAEMO is not product-specific and can conveniently be used with any factor replacement product. In addition, a companion app for children (florio HAEMO Kids) that can be used in conjunction with the parent/caregiver mode of the florio HAEMO app has been developed. florio HAEMO Kids is designed to enable children to learn the importance of prophylactic treatment interactively and offers age- appropriate features to help children keep track of prophylaxis and progress. Population pharmacokinetic (PK)-powered real-time factor level estimations are important to help people with hemophilia avoid unexpected bleeds and guide their daily activities.12, 13 Bayesian analysis is an accepted methodology for PK-guided, personalized treatment plans and fundamental in florio HAEMO for hemophilia A or B patients to estimate real-time factor levels.13-15 florio HAEMO uses McMaster PopPK, which is CE-marked as an in vitro diagnostic (IVD) device class I in accordance with the EU IVD Directive.16 McMaster 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

hemophilia, patient preference, pharmacokinetics, telemedicine

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