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Haemophilia care is currently undergoing a transformative shift as nurses in gene therapy take on expanded roles in clinical management. Consequently, this rare bleeding disorder now moves toward viral-vector gene transfer. This shift allows many adults to stop regular prophylaxis with minimal bleeding. Moreover, as gene therapy becomes a standard option, nursing responsibilities must grow to encompass complex multidisciplinary care. Therefore, nurses now act as the primary bridge between advanced genetic technology and patient-centered outcomes.
Nurses play a central role throughout the treatment pathway. Specifically, they guide shared decision-making and prepare patients for the infusion process. During the infusion, they provide vigilant observation to ensure patient safety. In addition, they deliver safe peri-infusion care and coordinate extensive monitoring after the procedure. Furthermore, they are responsible for the early detection of adverse events. Their clinical duties also include the long-term follow-up of liver function, factor levels, and treatment durability. Thus, they ensure that clinical benefits remain sustainable over time.
Education remains a cornerstone of the nursing profession. In the context of genetic treatments, nurses must explain complex uncertainties and ethical considerations. For instance, they provide lifestyle counseling and support psychosocial adjustment after treatment. Additionally, they ensure continuity of care across various hub-and-spoke networks. Consequently, patients feel more empowered to manage their health in this new therapeutic era. Importantly, nurses also contribute to registries and research. By generating real-world evidence, they help evaluate the long-term safety and effectiveness of these therapies.
Nurses ensure safe delivery by observing patients for immediate adverse reactions and maintaining precise infusion rates through specialized equipment.
They coordinate frequent testing for factor levels and liver enzymes while providing the psychosocial support needed to manage long-term treatment expectations.
Disclaimer: This content is for informational and educational purposes only and does not constitute medical advice. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Refer to the latest local and national guidelines for clinical practice.
References
Mulders G et al. Defining the Role of Nurses in Gene Therapy for Haemophilia. Haemophilia. 2026 May 21. doi: 10.1111/hae.70317. PMID: 42165220.
Srivastava A, Santagostino E, Dougall A, et al. WFH Guidelines for the Management of Hemophilia, 3rd edition. Haemophilia. 2020;26 Suppl 6:1-158. doi: 10.1111/hae.14046.
Abu-Riash M, Ahmed SO, Al-Zahrani H. The role of nursing in gene therapy for haemophilia. Lancet Haematol. 2020 Dec;7(12):e860. doi: 10.1016/S2352-3026(20)30372-0.
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