J Haem Pract 2016; 3(2):1 - 5. doi: 10.17225/jhp00078

Authors: Kate Khair, Kuixing Li, Ljiljana Rakić, Bongi Mbele, Robyn Shoemark, Marlene Beijlevelt, Jim Munn, Georgina Floros, Mahmoud Abu-Riash, Ana Claudia Acerbi

Kate Khair
Haemophilia Centre, Great Ormond Street Hospital for Children NHS Foundation Trust, London WC1N 3JH UK. Email:

Kuixing Li
Department of Hematology, Peking Union Medical College Hospital, Peking, China

Ljiljana Rakić
Haemophilia Centre and Blood Transfusion Institute of Serbia. 11000 Belgrade, Serbia

Bongi Mbele
Haemophilia Comprenhensive Clinic, Charlotte Maxeke Academic Hospital, Parktown, Johannesburg 2001, South Africa

Robyn Shoemark
The Children’s Hospital at Westmead, Sydney, New South Wales, Australia

Marlene Beijlevelt
Haemophilia Treatment Centre, Academic Medical Centre, Meibergdreef 9, 1105 Amsterdam, The Netherlands

Jim Munn
University of Michigan – Hemophilia and coagulation disorders Program, 1500 E. Med Cr. Dr. Ann Arbour, Michigan, USA

Georgina Floros
Hemophilia Centre, St Michael’s Hospital, Toronto, Ontario M5B 1W8, Canada

Mahmoud Abu-Riash
Oncology Center, King Faisal Specialist Hospital and Research Center, P.O. Box 3354, Riyadh 11211, Saudi Arabia

Ana Claudia Acerbi
Federal University of São Paulo, São Paulo, Brazil


Haemophilia nursing roles continue to develop alongside nursing as a profession. There are now nurses who practice autonomously, much like a medical practitioner, and many who have extended their roles to deliver direct patient care, education and research. There has been little, if any, comparison with haemophilia nurse roles internationally, nor of the impact of these roles on patient reported outcomes. This paper reports the results of an international survey, of 297 haemophilia nurses from 22 countries, describing current day practice and care. Many nurses work above and beyond their funded hours to improve care through research and evidence-based practice. While some are able to attend international meetings to report and discover this evidence, many due to financial constraints, are not. Others reported difficulty with communicating in English, which limited congress attendance. With on-line learning capability, sharing of best practice is now possible, and this approach should be a platform developed in coming years to further enhance haemophilia nursing practice and ultimately patient care.


The authors wish to thank all of the haemophilia nurses who participated in the survey.




  1. Colvin BT, Astermark J, Fischer K, Gringeri A, Lassila R, Schramm W, Thomas A, Ingerslev J; Inter Disciplinary Working Group. European principles of haemophilia care. Haemophilia 2008;14:361–74. doi: 10.1111/j.1365-2516.2007.01625.x.
  2. Khair K, Holland M, Vidler V, Loran C, Harrington C. Why don’t haemophilia nurses do research? Haemophilia 2012:18;540-543. doi: 10.1111/j.1365-2516.2012.02749.x.
  3. McDonnell A, Goodwin E, Kennedy F, Hawley K, Gerrish K, Smith C. An evaluation of the implementation of Advanced Nurse Practitioner (ANP) roles in an acute hospital setting. J Adv Nurs 2011;67:2004-14
  4. Gregorowski A, Brennan E, Chapman S, Gibson F, Khair K, May L, Lindsay-Waters A. An action research study to explore the nature of the nurse consultant role in the care of children and young people. J Clin Nurse 2013;1-2:201-10. doi: 10.1111/j.1365-2702.2012.04140.x.
  5. Forrester C, Bielby H, Johns S, Efford J, Holland M, Khair K; United Kingdom Haemophilia Nurse’s Association. Potential for development of haemophilia link nurse role within UK hospitals. Haemophilia 2013;19:578-82. doi: 10.1111/hae.12144.
  6. O’Shea E, Coughlan M, Corrigan H, McKee G. Evaluation of a nurse-led haemophilia counselling service. Br J Nurs 2012;14:868-70.
  7. Aiken L, Clarke S, Cheung R, Sloane D, Silber J. Educational levels of hospital nurses and surgical patient mortality. J Am Medic Assoc 2003;290:1617-1623.
  8. Partners in Bleeding Disorder Education available at Last accessed 3 June 2016.
  9. American Nurses Credentialing Center (ANCC) (accessed June 14, 2016).
  10. Khair K, Barker C, Bedford M, Elliott D, Harrington C, Lawrence K, Mackett N, Pollard D. A core competency framework for haemophilia nurses in the UK. J Haem Pract 2013; 1(1):J Haem Pract 2014; 1(1): 32-36. doi: 10.17225/jhp.00010 also available at Last accessed 3 June 2016.
  11. Harrington C, Bedford M, Andritschke K, Barrie A, Elfvinge P, Grønhaug S, Mueller-Kagi E, Leenders B, Schrijvers LH. A European curriculum for nurses working in haemophilia. Haemophilia 2016;1:103-9. doi: 10.1111/hae.12785.

The Journal of Haemophilia Practice is published by Haemnet.

Haemnet is a registered charity that brings together and gives a voice to haemophilia nurses, physiotherapists and allied health care professionals, providing forums for collaborative research, educational activities and support.