A Banchev1,2, G Goldmann1, N Marquardt1, C Klein1, S Horneff1, R Langenkamp1, T Frankenberger1, J Oldenburg1. 1. Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany. 2. Department of Paediatric Haematology and Oncology, University Hospital "Queen Giovanna - ISUL," Sofia, Bulgaria.
Abstract
BACKGROUND: Record keeping is integral to home treatment for haemophilia. Issues with paper diaries include questionable compliance, data validity and quality. Implementation of electronic diaries (e-diaries) in haemophilia patients could improve documentation of home treatment. AIM: This article evaluates the effects of an e-diary, Haemoassist, on recording and patient compliance with therapy. PATIENTS AND METHODS: An explorative study was used to assess the sequential use of paper diaries and e-diaries by 99 patients with severe haemophilia A or B and 1 with severe factor VII deficiency. Median age was 41 years. Information was obtained from paper records for 3 years preceding the introduction of an electronic record system and the first 6 to 12 months of Haemoassist use. Data from the 3-year period were averaged. Missing data for rounded 12 months of e-diary use were extrapolated to correspond to a full year. RESULTS: Enhancement of 23% in record delivery was observed for the period of Haemoassist use (p = 0.013). Twenty-one percent increase in patients' compliance for data reporting (from 65% 35 to 86% 22, p = 0.003) and 16% increase for documentation of bleedings (from 68 to 84% of patients, p = 0.01) were detected. Compliance to prescribed therapy of patients for the whole studied period improved by 6% (from 82% ± 29 to 88% ± 25, p = 0.05). Major advances were demonstrated predominantly in the age groups of between 13 and 20 and 21 and 40 years. CONCLUSION: e-Diaries' use enables improved recording of information about patients' home treatment and bleeding episodes. Enhanced compliance with therapy may be a further benefit. Georg Thieme Verlag KG Stuttgart · New York.
BACKGROUND: Record keeping is integral to home treatment for haemophilia. Issues with paper diaries include questionable compliance, data validity and quality. Implementation of electronic diaries (e-diaries) in haemophiliapatients could improve documentation of home treatment. AIM: This article evaluates the effects of an e-diary, Haemoassist, on recording and patient compliance with therapy. PATIENTS AND METHODS: An explorative study was used to assess the sequential use of paper diaries and e-diaries by 99 patients with severe haemophilia A or B and 1 with severe factor VII deficiency. Median age was 41 years. Information was obtained from paper records for 3 years preceding the introduction of an electronic record system and the first 6 to 12 months of Haemoassist use. Data from the 3-year period were averaged. Missing data for rounded 12 months of e-diary use were extrapolated to correspond to a full year. RESULTS: Enhancement of 23% in record delivery was observed for the period of Haemoassist use (p = 0.013). Twenty-one percent increase in patients' compliance for data reporting (from 65% 35 to 86% 22, p = 0.003) and 16% increase for documentation of bleedings (from 68 to 84% of patients, p = 0.01) were detected. Compliance to prescribed therapy of patients for the whole studied period improved by 6% (from 82% ± 29 to 88% ± 25, p = 0.05). Major advances were demonstrated predominantly in the age groups of between 13 and 20 and 21 and 40 years. CONCLUSION: e-Diaries' use enables improved recording of information about patients' home treatment and bleeding episodes. Enhanced compliance with therapy may be a further benefit. Georg Thieme Verlag KG Stuttgart · New York.
Authors: Maria Teresa Álvarez-Román; Sara García-Barcenilla; Tamara Cebanu; Elena González-Zorrilla; Nora V Butta; Ihosvany Fernandez-Bello; Monica Martín-Salces; Maria Isabel Rivas-Pollmar; Victor Jiménez-Yuste Journal: Haemophilia Date: 2020-06-12 Impact factor: 4.263