Haemophilia specialist nurses’ perceptions of haemophilia B

Steve Chaplin; Maj Friberg Birkedal; Erica Crilly; Simon Fletcher; Sara Garcia; Greta Mulders; Linda Myrin-Westesson; Debra Pollard; Anna Sanigorska; Nanda Uitslager

doi:10.2478/jhp-2021-0013

Abstract

Abstract Introduction

Some clinicians believe that haemophilia B is associated with less bleeding than haemophilia A, yet there appears to be little difference in health-related outcomes. Current clinical practice reduces the risk of bleeds, making differences difficult to measure. We surveyed specialist haemophilia nurses to discern their opinions about the impact of haemophilia B compared to haemophilia A.

Methods

Between July and September 2020, European and Canadian nurses were invited to complete an online survey (25 questions) about perceptions of management and treatment of haemophilia B.

Results

Fifty-nine nurses (46 European, 13 Canadian) completed the survey. Bleeding was reported as different in haemophilia B by 37% of respondents, and treatment as different by over half. Opinions and experience around using extended half-life (EHL) products varied. Self-reported confidence in using EHL products was rated at a mean of 7.1 (range 3–10) with 47% believing these would remain the optimal treatment in 2025.

Conclusion

Some nurses believe haemophilia A and B are managed differently. Variations in experience and levels of confidence in the use of EHL products, combined with a belief that these products will remain an optimal treatment for haemophilia B for the next five years, indicates a need for education to promote confidence and competence.

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Authors

Steve Chaplin
Maj Friberg Birkedal

Haemophilia Centre University Hospital Rigshospitalet, Copenhagen, Denmark
Erica Crilly

Inherited Bleeding Disorders Programme, BC Children's Hospital, Vancouver, Canada
Simon Fletcher
Sara Garcia

Thrombosis and Haemostasis Unit, Haematology Department, Hospital La Paz Institute for Health Research – IdiPAZ (La Paz University Hospital – Universidad Autónoma de Madrid), Madrid, Spain
Greta Mulders

Haemophilia Centre, Erasmus University Medical Centre, Rotterdam, The Netherlands
Linda Myrin-Westesson

Coagulation Centre, Department of Medicine/Section of Hematology and Coagulation, Sahlgrenska University Hospital, Gothenburg, Sweden
Debra Pollard
Anna Sanigorska

Oxford Haemophilia & Thrombosis Centre, Churchill Hospital, Oxford, UK
Nanda Uitslager

N.Uitslager@umcutrecht.nl

Division of Internal Medicine and Dermatology, Van Creveldkliniek University Medical Center Utrecht, The Netherlands