Quality of electronic treatment records and adherence to prophylaxis in haemophilia and von Willebrand disease: Systematic assessments from an electronic diary

Abstract

Introduction: Haemoassist TM 2 is an electronic system designed for people with bleeding disorders and their physicians to record prophylactic infusions and treatment of bleeds. It aims to improve adherence by permitting reminders and accuracy of documentation by facilitating real-time reporting. Aim: To assess documentation quality and adherence to prophylactic regimens in patients with haemophilia A, haemophilia B or von Willebrand disease who are using Haemoassist TM 2. Methods: Ten centres enrolled consecutive patients, who had been using Haemoassist TM 2 for ≥ 3 months (Cohort 1, 'quality of documentation'). Of these, patients who had a specified prophylactic regimen in Haemoassist TM 2 for ≥ 3 months were eligible for inclusion in Cohort 2 ('adherence to prophylaxis'). Results: Cohort 1 comprised 796 patients (71% with severe haemophilia A; median 20.5 months of Haemoassist TM 2 use). The most common method of documentation for patients was using the mobile app; the median time between infusion and documentation was 4 hours using the app, compared with 85 hours using a web portal on a stationery device. The median total annualised number of infusions was consistent in the first and last 3 months of documentation (128; IQR: 70-184 and 120; IQR 64-176, respectively). Cohort 2 comprised 202 patients (79% severe haemophilia A; median of 13 months on prophylactic regimen in Haemoassist TM 2). The rate of adherence to prophylaxis was 83%; median deviation between planned and actual infusion time was ± 2 hours. This is an open access article under the terms of the Creative Commons Attribution-NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

Electronic diaries in the management of haemophilia gene therapy: Perspective of an expert group from the German, Austrian and Swiss Society on Thrombosis and Haemostasis (GTH)

“…Based on such tools, a retrospective, multicentre study demonstrated improved treatment adherence in a large group of PWH with haemophilia A and haemophilia B from 10 centres in two countries. 14 In addition, the quality of documentation and commitment to documentation could be improved. Adherence to treatment can be difficult to assess in clinical trials.…”

“…In haemophilia care, several tools for accurate and reliable documentation of treatment have been developed using electronic diaries and mobile apps such as Haemoassist™ or SmartMedication™ in Germany. Based on such tools, a retrospective, multicentre study demonstrated improved treatment adherence in a large group of PWH with haemophilia A and haemophilia B from 10 centres in two countries 14 . In addition, the quality of documentation and commitment to documentation could be improved.…”

Safety of intramuscular COVID‐19 vaccination in patients with haemophilia

“…The distribution of haemophilia type and severity was similar to previous studies performed in German haemophilia centres. 16 , 17 , 18 The distribution of ages showed an underrepresentation of children due to the licensing status of COVID‐19 vaccines in 2021. The time course of vaccinations is shown in Figure 2 .…”

First experience of a hemophilia monitoring platform: florio HAEMO

“…Poor adherence and delays in addressing medication issues are inherent challenges with paper diaries 2 . Electronic documentation tools such as hand‐held 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 5 …”

“…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][3][4][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, myPK-FiT ® , myWAPPS, MicroHealth, myABDR, myCBDR) and, the most recently introduced app, florio HAEMO.…”