Impact and disease burden in moderate and severe hemophilia from patient and nursing perspective. The NURSES-WHO-CARE study

Sara García-Barcenilla, Hospital La Paz Institute for Health Research-IdiPAZ (La Paz University Hospital-Universidad Autónoma de Madrid), Madrid, Spain
Eva Álvarez-Martínez, Hemophilia Unit, Hospital Universitario Vall d’Hebron, Barcelona, Spain
Francisco J. López-Jaime, Hospital Regional Universitario de Málaga, Málaga, Spain
Montserrat Rambla-Pérez, Hemostasis and Thrombosis Unit, Santa Creu i Sant Pau Hospital, Barcelona, Spain
Yolanda Echarte-Buil, Hematology and Hemotherapy Department, Miguel Servet University Hospital, Zaragoza, Spain
Pau Bosch, Hemostasis and Thrombosis Unit, La Fe University and Polytechnic Hospital, Valencia, Spain
Pilar Gonzalez-Álvarez, Hemostasis and Thrombosis Unit, Hospital Universitario Central de Asturias, Oviedo, Spain
Carmen Álvarez, Medical Expert Hemophilia and Rare Blood Disorders, Roche Farma, Madrid, Spain
Itziar Guerra, Medical Expert Hemophilia and Rare Blood Disorders, Roche Farma, Madrid, Spain
Ana Torres-Ortuño, Department of Psychiatry and Social Psychology, University of Murcia, Murcia, Spain

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. Methods: 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: emophilia. Burden. Knowledge. Nursing. Care. CATCH.