Haemophilia Centre, Great Ormond Street Hospital for Children NHS Foundation Trust, London WC1N 3JH UK. Email: Kate.Khair@gosh.nhs.uk
Department of Hematology, Peking Union Medical College Hospital, Peking, China
Haemophilia Centre and Blood Transfusion Institute of Serbia. 11000 Belgrade, Serbia
Haemophilia Comprenhensive Clinic, Charlotte Maxeke Academic Hospital, Parktown, Johannesburg 2001, South Africa
The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
Haemophilia Treatment Centre, Academic Medical Centre, Meibergdreef 9, 1105 Amsterdam, The Netherlands
University of Michigan – Hemophilia and coagulation disorders Program, 1500 E. Med Cr. Dr. Ann Arbour, Michigan, USA
Hemophilia Centre, St Michael’s Hospital, Toronto, Ontario M5B 1W8, Canada
Oncology Center, King Faisal Specialist Hospital and Research Center, P.O. Box 3354, Riyadh 11211, Saudi Arabia
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.
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.