NUR04 - A Nurse-Led Multidisciplinary Approach to post-infusion Gene Therapy Management
NUR04
A Nurse-Led Multidisciplinary Approach to post-infusion Gene Therapy Management
D. Gorman1,*, M. Nolan1, M. Gannon1, J. Danos1, A. George1, N. O Connell1
1National Coagulation centre, St James's Hospital, Dublin, Ireland
Introduction: Gene therapy for haemophilia is a significant treatment advance for improved bleed protection, quality of life and health outcomes. However, post-infusion care presents new challenges due to the need for structured post infusion monitoring and support to ensure patient safety, treatment durability and psychological wellbeing. We have developed a framework to meet these challenges using a Nurse-led multidisciplinary approach for management of People With Haemophilia (PWH) after gene therapy.
Methods: The National Coagulation Centre (NCC) haemophilia nursing team designed a nurse-led post-infusion management pathway, informed by the product SPC, manufacturer training materials, clinical trial protocols and experience. A proforma for assessment documented adverse events, bleeds, illness and medications and included a referral pathway to the Consultant Haematologist if required. Laboratory tests included liver function tests (LFT), factor IX (FIX) levels, and creatine kinase (CK). A follow-up call to the PWH was conducted by the specialist nurse on the day of assessment to inform and educate.
Results: The NCC post gene therapy management pathway was utilized to manage a PWH post gene therapy in 2025. Development of the pathway was essential to provide training and structure for the NCC nursing team and provided clarity for the team during the ongoing monitoring of the PWH. The process of pathway design also enhanced multidisciplinary team working. The proforma provided a means of structured communication between nurses and consultants, and provided opportunities for peer-to-peer learning. Consistent monitoring enabled early identification of abnormal results and timely interventions. The inclusion of a pathway for medical review provided a safety net for unexpected events. The PWH reported reassurance and reduced anxiety from structured contacts with the NCC specialist nurses. The nurse-led multidisciplinary management approach, with integrated psychosocial care, enhanced patient engagement and empowerment.
Discussion/Conclusion: A nurse-led multidisciplinary framework for gene therapy monitoring provides the continuous education, standardised monitoring tools and effective communication pathways which are key to optimising outcomes and supporting both patients and nurses. Future inclusion of PWH in the design and communication of their post infusion management plan is likely to further enhance participation and adherence.
Disclosure of Interest: D. Gorman: None declared, M. Nolan: None declared, M. Gannon: None declared, J. Danos: None declared, A. George: None declared, N. O Connell Grant/Research support from: Niamh O’Connell has received Grant/Research support from Sobi, has acted as a Consultant for: AstraZeneca, CSL Behring and Sobi and has participate in the Speaker Bureau of: Bayer, CSL Behring, Takeda, Sobi and Sanofi. All fees are donated to an institutional charitable body that supports education in haemostasis and thrombosis., Speaker Bureau of: Niamh O’Connell has received Grant/Research support from Sobi, has acted as a Consultant for: AstraZeneca, CSL Behring and Sobi and has participate in the Speaker Bureau of: Bayer, CSL Behring, Takeda, Sobi and Sanofi. All fees are donated to an institutional charitable body that supports education in haemostasis and thrombosis.