Impact and disease burden in moderate and severe hemophilia from patient and nursing perspective. The NURSES-WHO-CARE study
- 2024, Volume 43 - Number 3
- Published: March 20, 2025
Impact and disease burden in moderate and severe hemophilia from patient and nursing perspective. The NURSES-WHO-CARE study
Sara García-Barcenilla 1, Eva Álvarez-Martínez 2, Francisco J. López-Jaime 3, Montserrat Rambla-Pérez 4, Yolanda Echarte-Buil 5, Pau Bosch 6, Pilar Gonzalez-Álvarez 7, Carmen Álvarez 8, Itziar Guerra 8, Ana Torres-Ortuño 9
1 Hospital La Paz Institute for Health Research-IdiPAZ (La Paz University Hospital-Universidad Autónoma de Madrid), Madrid, Spain; 2 Hemophilia Unit, Hospital Universitario Vall d’Hebron, Barcelona, Spain; 3 Hospital Regional Universitario de Málaga, Málaga, Spain; 4 Hemostasis and Thrombosis Unit, Santa Creu i Sant Pau Hospital, Barcelona, Spain; 5 Hematology and Hemotherapy Department, Miguel Servet University Hospital, Zaragoza, Spain; 6 Hemostasis and Thrombosis Unit, La Fe University and Polytechnic Hospital, Valencia, Spain; 7 Hemostasis and Thrombosis Unit, Hospital Universitario Central de Asturias, Oviedo, Spain; 8 Medical Expert Hemophilia and Rare Blood Disorders, Roche Farma, Madrid, Spain; 9 Department of Psychiatry and Social Psychology, University of Murcia, Murcia, Spain
Sara García-Barcenilla, Eva Álvarez-Martínez, Francisco J. López-Jaime, Montserrat Rambla-Pérez, Yolanda Echarte-Buil, Pau Bosch, Pilar Gonzalez-Álvarez, Carmen Álvarez, Itziar Guerra, Ana Torres-Ortuño
La información completa de afiliaciones y autor de correspondencia está disponible en la versión original en PDF.
*Correspondence: Ana Torres-Ortuño, Email not available
Summary
Abstract
Introduction: Pain, bleeding frequency, and functional status are major concerns for patients with hemophilia and caregivers.
Objective: The study aimed to evaluate the disease burden in patients, the knowledge of patients on their disease and treatment, and the role of the specialized nurses in the care of these patients in Spain.
Material and method: This was a non-interventional, cross-sectional, multicenter study. A total of 103 patients with moderate or severe hemophilia A (89 adults and 14 children), 14 caregivers, and 16 nurses from Spain (NURSES-WHO-CARE study) participated in the study.
Results: About 32.6% of adult patients stated to rarely think about hemophilia. Most of the patients (99%) stated to know its signs and symptoms. Regarding nurses, all of them pointed out to participate in the education of patients and/or caregivers in terms of disease, treatment, and adherence, among others.
Conclusion: Hemophilia has an impact on patient’s and caregiver’s daily lives despite care improvements and new treatments. Patient’s knowledge on their disease and treatment remains an important aspect influencing their care. The specialized nurse is a central figure in this education and comprehensive care, especially in moderate and severe cases.
Keywords: Hemophilia; Burden; Knowledge; Nursing; Care; CATCH
