Abstract Number: PB1136
Meeting: ISTH 2022 Congress
Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Clinical
Background: The quality of life in persons with hemophilia A (PwHA) could be directly influenced by the hemophilia nurse care
Aims: To evaluate the preoccupation and disease burden in moderate and severe PwHA and the impact of the nurse care
Methods: Nurses-Who-Care (ML42270) is a two-phase non-interventional study: 1) ad hoc questionnaire was completed by nurses to describe their role concerning the work they perform with PwHA; 2) the preoccupation and disease burden in PWHA and the impact of the nurse care will be evaluated. Study design in figure 1. Patients signed the informed consent and were asked to complete the CATCH questionnaire and a study specific questionnaire, during one routine visit with their clinical nurse (principal investigator). Patients ≥12 year old, moderate and severe PwHA were included. This Study was carried out according to the ERB and current legislation in Spain
Results: Study is in progress, 15 Hospitals across Spain have been included to obtain a representative sample of the Spanish population. Preliminary data phase 1 have showed the crucial role of nurses in PWHA throughout the disease. (Table 1). It has been shown that 70% nurses spend most of their time in coagulopathies. Also, the 100% of nurses promote and participate in the learning of patients mainly by taking part in the disease journey, teaching techniques related home treatment, encouraging adherence and compliance, and positively influencing their perception of the disease and motivating the achievement of objectives
Conclusion(s): This first study highlights the key role of nurses providing relevant information related to self-management of PwHA and their contribution to improving clinical practice and patient care of Haemophilia in Spain. Data from the next phase will allow knowing the burden of the disease of PwHA and the influence of the work of nurses
Figure 1 – Study Design
Nurses Who Care – Study Design
Table 1 – Study results
Nurses Who Care – Study results
To cite this abstract in AMA style:
García Barcenilla S, Álvarez-Martínez E, Jaime F, Echarte-Buil Y, Gago-Caballero B, Coca m, Guerra I, Torres-Ortuño A. An Observational Study To Evaluate The Impact And Disease Burden In Moderate And Severe Hemophilia From Nursing And Patient Perspective (Study Nurses-Who-Care / ML42270) [abstract]. https://abstracts.isth.org/abstract/an-observational-study-to-evaluate-the-impact-and-disease-burden-in-moderate-and-severe-hemophilia-from-nursing-and-patient-perspective-study-nurses-who-care-ml42270/. Accessed September 21, 2023.« Back to ISTH 2022 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/an-observational-study-to-evaluate-the-impact-and-disease-burden-in-moderate-and-severe-hemophilia-from-nursing-and-patient-perspective-study-nurses-who-care-ml42270/