Impact of Telemedicine Tools on Record Keeping and Compliance in Haemophilia Care
31 March 2018
31 October 2018
17 January 2019 (online)
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.
* A.B. and G.G contributed equally to this work.
- 1 Teitel JM, Barnard D, Israels S, Lillicrap D, Poon M-C, Sek J. Home management of haemophilia. Haemophilia 2004; 10 (02) 118-133
- 2 Brackmann HH, Effenberger W, Schwaab R, Hess L, Hanfland P, Oldenburg J. Quality management and quality assurance in haemophilia care: a model at the Bonn haemophilia centre. Haemophilia 2002; 8 (03) 211-216
- 3 Oldenburg J. Optimal treatment strategies for hemophilia: achievements and limitations of current prophylactic regimens. Blood 2015; 125 (13) 2038-2044
- 4 Khair K, Holland M. Managing hemophilia : the role of mobile technology. Smart Homecare Technol Telehealth 2014; 2: 39-44
- 5 Transfusionsgesetz. Available at: www.juris.de . Accessed February 12, 2018
- 6 Walker I, Sigouin C, Sek J. , et al. Comparing hand-held computers and paper diaries for haemophilia home therapy: a randomized trial. Haemophilia 2004; 10 (06) 698-704
- 7 Baker RI, Laurenson L, Winter M, Pritchard AM. The impact of information technology on haemophilia care. Haemophilia 2004; 10 (Suppl. 04) 41-46
- 8 Vallée-Smejda S, Hahn M, Aubin N, Rosmus C. Recording practices and satisfaction of hemophiliac patients using two different data entry systems. Comput Inform Nurs 2009; 27 (06) 372-378
- 9 Mondorf W, Siegmund B, Mahnel R. , et al. Haemoassist--a hand-held electronic patient diary for haemophilia home care. Haemophilia 2009; 15 (02) 464-472
- 10 Richert S. Beyond videoconferencing: is your infrastructure ready for telemedicine?. Health Manag Technol 2017; 38 (04) 10
- 11 Langenkamp R. Implementation and migration of haemophilia-treatment-diaries from paper based to electronic documentation at haemophilia CCC at the University of Bonn, Poster Abstract. Res Pract Thromb Haemost 2017; 1: 1-1451
- 12 Jamison RN, Raymond SA, Levine JG, Slawsby EA, Nedeljkovic SS, Katz NP. Electronic diaries for monitoring chronic pain: 1-year validation study. Pain 2001; 91 (03) 277-285
- 13 Sholapur NS, Barty R, Wang G, Almonte T, Heddle NM. A survey of patients with haemophilia to understand how they track product used at home. Haemophilia 2013; 19 (05) e289-e295
- 14 Thornburg CD, Duncan NA. Treatment adherence in hemophilia. Patient Prefer Adherence 2017; 11: 1677-1686