Sistema de Salut de Catalunya
Institut Català de la Salut
[García-Barcenilla S, Castro Blanco A] Congenital and Acquired Coagulopathies Unit, Hospital La Paz Institute for Health Research – IdiPAZ (La Paz University Hospital – Universidad Autónoma de Madrid), Madrid, Spain. [Rambla Pérez M] Hematology Department, Thrombosis & Hemostasis Unit, Sant Pau Campus Salut Barcelona (HSP), Hospital de la Santa Creu i Sant Pau, Unitat Integrada Hemofília SJD-HSP, CSUR Coagulopatías, XUEC Coagulopathies, Barcelona, Spain. [Pérez N] Blood Bank and Apheresis Unit, Río Hortega University Hospital, Valladolid, Spain. [Diaz A] Hemostasis Unit, Doctor Josep Trueta University Hospital, Girona, Spain. [Fernandez Sarmiento C, Álvarez Martínez E] Unitat d’Hemofília, Servei d’Hematologia, Vall d’Hebron Hospital Universitari, Barcelona, Spain
Vall d'Hebron Barcelona Hospital Campus
2025-10-30T13:32:28Z
2025-10-30T13:32:28Z
2025-09
Curriculum; Educational; Haemophilia
Currículum; Educatiu; Hemofília
Currículum; Educativo; Hemofilia
Introduction: There is a lack of consensus on professional competencies or educational requirements needed for registered nurses working with haemophilia patients (namely, haemophilia nurses) in thrombosis and haemostasis units in Spain. Their role is not officially recognised in many healthcare systems (HCS), including Spain. Aim: To identify and define the optimal curriculum and professional responsibilities of haemophilia nurses in Spain. Methods: A total of 205 items were developed through literature review, and the input was presented and rated using a 10-point Likert scale to reach posterior consensus. Items were grouped into three blocks: optimal curriculum, responsibilities in therapeutic management and follow-up, and roles in patient and family education. Consensus was defined as a mean score between 6.6 and 10. A virtual round table with final statements was held on 19 March 2024 with the participation of 13 haemophilia nurses. Results: Agreement was reached on all items. A three-level framework (basic, advanced, expert) was proposed as a tool for knowledge of pathophysiology, laboratory procedures and therapeutic strategies. Nurses also pointed to an active role in treatment management, clinical assessment and education. Other ideal responsibilities included participation in research, education of colleagues, patients and families, and advocacy within the HCS. Conclusion: This consensus-based proposal aimed to provide a structured, standardised framework for the education, scope, and recognition of congenital coagulopathies nurses in Spain. This framework of competencies could be the stepping stone to formal training programmes, accreditation systems, and the advancement of professional development in specialised nursing care for rare bleeding disorders.
This study was funded by Roche Farma (Spain).
Article
Published version
English
Curriculum vitae; Hemofília; Infermeres; NAMED GROUPS::Persons::Occupational Groups::Health Personnel::Nurses; DISEASES::Hemic and Lymphatic Diseases::Hematologic Diseases::Blood Coagulation Disorders::Blood Coagulation Disorders, Inherited::Hemophilia A; ANTHROPOLOGY, EDUCATION, SOCIOLOGY, AND SOCIAL PHENOMENA::Education::Curriculum; DENOMINACIONES DE GRUPOS::personas::grupos profesionales::personal sanitario::enfermeros; ENFERMEDADES::enfermedades hematológicas y linfáticas::enfermedades hematológicas::trastornos de la coagulación sanguínea::trastornos de la coagulación sanguínea hereditarios::hemofilia A; ANTROPOLOGÍA, EDUCACIÓN, SOCIOLOGÍA Y FENÓMENOS SOCIALES::educación::programa de estudios
Wiley
Haemophilia;31(5)
https://doi.org/10.1111/hae.70105
Attribution-NonCommercial 4.0 International
http://creativecommons.org/licenses/by-nc/4.0/
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