Hamostaseologie 2019; 39(04): 347-354
DOI: 10.1055/s-0038-1676128
Original Article
Georg Thieme Verlag KG Stuttgart · New York

Impact of Telemedicine Tools on Record Keeping and Compliance in Haemophilia Care

A. Banchev*
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
,
G. Goldmann*
1   Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany
,
N. Marquardt
1   Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany
,
C. Klein
1   Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany
,
S. Horneff
1   Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany
,
R. Langenkamp
1   Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany
,
T. Frankenberger
1   Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany
,
J. Oldenburg
1   Institute for Experimental Haematology and Transfusion Medicine, University Hospital Bonn, University of Bonn, Bonn, Germany
› Institutsangaben
Weitere Informationen

Publikationsverlauf

31. März 2018

31. Oktober 2018

Publikationsdatum:
17. Januar 2019 (online)

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.

* A.B. and G.G contributed equally to this work.


 
  • References

  • 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