Quality of electronic treatment records and adherence to prophylaxis in haemophilia and von Willebrand disease: Systematic assessments from an electronic diary
| Autor: | Susan Halimeh, Luis J G Frade, D Adolf, Martin Hukauf, Antonio Palomero, Amparo Santamaría, Santiago Bonanad, Jan Reichmann, Andreas Tiede, Victor Jiménez Yuste, Faustino Garcia Candel, Juan Eduardo Megías-Vericat, Johannes Oldenburg, Fernanda Martínez, Mariana Canaro, Georg Goldmann, Monika Sparber-Sauer |
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| Rok vydání: | 2020 |
| Předmět: |
Male
Pediatrics medicine.medical_specialty Haemophilia A MEDLINE 030204 cardiovascular system & hematology Hemophilia A Haemophilia Electronic diary 03 medical and health sciences 0302 clinical medicine Surveys and Questionnaires Von Willebrand disease Humans Medicine Haemophilia B Genetics (clinical) Retrospective Studies business.industry Hematology General Medicine medicine.disease von Willebrand Diseases Regimen Cohort Female Electronics business 030215 immunology |
| Zdroj: | Haemophilia. 26:999-1008 |
| ISSN: | 1365-2516 1351-8216 |
| DOI: | 10.1111/hae.14178 |
| Popis: | Introduction HaemoassistTM 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 HaemoassistTM 2. Methods Ten centres enrolled consecutive patients, who had been using HaemoassistTM 2 for ≥ 3 months (Cohort 1, 'quality of documentation'). Of these, patients who had a specified prophylactic regimen in HaemoassistTM 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 HaemoassistTM 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 HaemoassistTM 2). The rate of adherence to prophylaxis was 83%; median deviation between planned and actual infusion time was ± 2 hours. Conclusion HaemoassistTM 2 was used consistently over prolonged periods of time and allowed for precise analysis of adherence to prophylaxis. |
| Databáze: | OpenAIRE |
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