Background: A broad scoping exercise was undertaken to assess and quantify haemophilia nursing care in Europe. Methods: A web-based survey in English was sent to known networks of haemophilia nurses working in Europe. This survey included questions concerning the haemophilia treatment centre, educational level, work activities, gaining knowledge/ expertise and development in the future. Results: In total, 94 nurses in 14 countries in Europe completed the survey. Overall, the majority (62%) of the nurses had over 20 years’ nursing experience, with 44% having more than 10 years’ experience in haemophilia. The educational level varied; with highest educational level of attainment being 41% at nondegree level nursing entry qualification, 35% BSc and 24% MSc. 21% worked in a centre where they treat only children, 26% only adults and 53% both. All had good access to treatment. The core activities (rated >80%) of a haemophilia nurse were: prepare and administer medication, venepuncture and CVADuse (except cannulation), providing education and telephone advice, coordination of (multidisciplinary) care and assistance with clinical trials. Furthermore, 35% stated that they initiated and performed nurse-led research. In the future, almost all nurses would like to develop their expertise and knowledge base by studying at Masters level and above, to have more responsibility, and to conduct research. Conclusion: This scoping exercise provides a baseline assessment of haemophilia nursing across Europe. The results may provide a basis for a more thorough investigation of the current role and the principles of haemophilia nursing care; future opportunities, and the training requirements to develop the specialty.
1 Fischer, K, van der Bom JG, Molho P, et al. Prophylactic versus onSdemand treatment strategies for severe haemophilia: a comparison of costs and longSterm outcome. Haemophilia 2002; 8T6U: 745S52.
2 Nilsson IM, Berntorp E, Löfqvist T, Pettersson H. TwentySfive years' experience of prophylactic treatment in severe haemophilia A and B. J Intern Med 1992; 232T1U: 25S32.
3 du Treil S, Rice J, Leissinger CA. Quantifying adherence to treatment and its relationship to quality of life in a wellScharacterized haemophilia population. Haemophilia 2007; 13T5U: 493S501.
4 Fischer K, Bom JG, MauserSBunschoten EP, Roosendaal G, Berg HM. Effects of haemophilic arthropathy on healthSrelated quality of life and socioSeconomic parameters. Haemophilia 2005; 11T1U: 43S8.
5 Colvin BT, Astermark J, Fischer K, et al. European principles of haemophilia care. Haemophilia 2008; 14T2U: 361S74.
6 Evatt BL. The natural evolution of haemophilia care: developing and sustaining comprehensive care globally. Haemophilia 2006; 12 Suppl 3: 13S21.
7 Watkins H. An Overview of the Role of Nurses and Midwives in Health Leadership in Europe. NHS Institute for Innovation and Improvement and European Hospital and Healthcare Federation, London, 2010.
8 Bedford M, Elliott D, Khair K, Mackett N. A competency framework for nurses caring for people with haemophilia and related bleeding disorders. Haemophilia Nurses Association, 2002.
9 Khair K, Barker C, Bedford M, Elliot D, Harrington C, Lawrence K, Mackett N, Pollard D, on behalf of the UK Haemophilia Nurses’ Association. A Competency Framework for Haemophilia Nurses. J Haem Pract 2014; 1T1U: 32S34.
10 Kleinert D, Orto C, Gioia K, Hannan M. Von Willebrand disease: a nursing perspective. J Obstet Gynecol Neonatal Nurs 1997; 26T3U: 271S6.
11 Kuhathong K, Chuansumrit A, Keorochana S, et al. Nursing roles in orthopaedic joint correction in haemophiliac patients. Haemophilia 2000; 6T6U: 672S6.
12 Schrijvers LH, BeijleveltSvan der Zande M, Peters M, Schuurmans MJ, Fischer K. Learning intravenous infusion in haemophilia: experience from the Netherlands. Haemophilia 2012; 18T4U: 516S20.
13 Affara F. ICN Framework of Competencies for the Nurse Specialist. International Council of Nurses, Geneva, 2009.