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DOI: 10.1055/s-0036-1571312
A Web Site to Improve Management of Patients with Inherited Bleeding Disorders in the Emergency Department: Results at 2 Years
Publication History
Publication Date:
12 April 2016 (online)
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Abstract
Treatment of patients with inherited bleeding disorders (PWIBD) in the emergency department (ED) is challenging. In 2010, a project was started involving all eight hemophilia centers (HC) and all 44 EDs of the Region of Emilia-Romagna (Italy) to improve emergency care for PWIBD. The project incorporates guidelines for emergency treatment, education for ED staff, and a dedicated Web site providing extensive information, proposing treatments, and sharing data with patients' electronic clinical records. A Web algorithm, accessible to PWIBD as well as ED and HC staff, suggests the first dose of concentrate for each type and severity of bleed or trauma. Following training courses in each ED, the network was activated. During 2012 and 2013, the site was visited 14,000 times, the EDs accessed the Web site 1,739 times, and used the algorithms 206 times. In two reference EDs, triage-assessment and triage-treatment times were reduced in 2013 and 2012 (27/20 and 110/71.5 minutes, respectively) and medical advice from the HC increased (54 vs. 24% cases). The main advantages of this system are better management of patients in ED (shorter triage-to-treatment times) and improved collaboration between HCs and EDs. The most critical point remaining is staff turnover in EDs, necessitating continual training.
* See “Contributing Authors” for the full list of contributors.
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References
- 1 Franchini M, Mannucci PM. Past, present and future of hemophilia: a narrative review. Orphanet J Rare Dis 2012; 7: 24
- 2 Rodeghiero F, Castaman G, Dini E. Epidemiological investigation of the prevalence of von Willebrand's disease. Blood 1987; 69 (2) 454-459
- 3 Peyvandi F, Menegatti M, Palla R. Rare bleeding disorders: worldwide efforts for classification, diagnosis, and management. Semin Thromb Hemost 2013; 39 (6) 579-584
- 4 Colvin BT, Astermark J, Fischer K , et al; Inter Disciplinary Working Group. European principles of haemophilia care. Haemophilia 2008; 14 (2) 361-374
- 5 Minhas HL, Giangrande PL. Presentation of severe haemophilia—a role for accident and emergency doctors?. Emerg Med J 2001; 18 (4) 246-249
- 6 Sharieff GQ, Trocinski DR, Thompson K. Pediatric patients with bleeding dyscrasias: what is the cause of delays in initiating replacement therapy?. J Pediatr Health Care 2001; 15 (1) 10-13
- 7 http://www.ukhcdo.org/docs/EmergencyCareStandardsFinalVersionJune2009 ; Accessed May 2015
- 8 http://registroemofiliarer.cup2000.it/ ; Accessed December 15, 2014
- 9 Tagliaferri A, Marietta M, Calizzani G , et al. Hub and Spoke: organization model for haemophilia centres of Emilia-Romagna Region. Haemophilia 2002; 8: 520 (abstract)
- 10 Bolton-Maggs PH. Optimal haemophilia care versus the reality. Br J Haematol 2006; 132 (6) 671-682
- 11 Pattacini C, Rivolta GF, Di Perna C, Riccardi F, Tagliaferri A ; Haemophilia Centres Network of Emilia-Romagna Region. A web-based clinical record ‘xl’Emofilia' for outpatients with haemophilia and allied disorders in the Region of Emilia-Romagna: features and pilot use. Haemophilia 2009; 15 (1) 150-158
- 12 Rivolta GF, Pattacini C, Di Perna C , et al. A web-based clinical record for haemophilia “xl'Emofilia”: three years of use by patients and doctors. Blood Transfus 2010; 8 (Suppl. 04) s44 OC 103
- 13 Tagliaferri A, Rivolta GF, Biasoli C , et al. A web-based registry of inherited bleeding disorders in the region of Emilia-Romagna: results at three and a half years. Haemophilia 2008; 14 (2) 343-354
- 14 Guidelines for Emergency Management of Haemophilia and von Willebrand Disease. Available at: http://www.hemophilia.ca/en/care-and-treatment/emergency-care/ ; Accessed April 21, 2015
- 15 MASAC. Guidelines for Emergency Department Management of Individuals with Hemophilia. www.hemophilia.org ; Accessed February 12, 2015
- 16 Fowler H, Lacey R, Keaney J, Kay-Jones C, Martlew V, Thachil J. Emergency and out of hours care of patients with inherited bleeding disorders. Haemophilia 2012; 18 (3) e126-e131