PB1136 - 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)

Tuesday, July 12, 2022

6:30 PM – 7:30 PM

Location: Exhibition

Presentation Format: In-Person

Co-Author(s)

SG

Sara García Barcenilla, RN

Nurse
Hospital Universitario La Paz-IdiPAZ
Madrid, Madrid, Spain
E�

Eva Álvarez-Martínez

Nurse
Hospital Universitario Vall d` Hebron
Barcelona, Catalonia, Spain

Presenting Author(s)

Francisco José López Jaime, MD

Hematologist
Hemostasis and Thrombosis Unit, Regional University Hospital of Málaga, IBIMA, Málaga, Spain.
Málaga, Andalucia, Spain

Co-Author(s)

YE

Yolanda Echarte-Buil

Nurse
Hospital Universitario Miguel Servet
Zaragoza, Aragon, Spain
BG

Beatriz Gago-Caballero

Nurse
Hospital Universitario Regional de Málaga
Malaga, Andalucia, Spain
mC

margarita Coca

Country Study Manager
Roche Farma
Madrid, Madrid, Spain
IG

Itziar Guerra

Medical expert Haemophilia
Roche Farma
Madrid, Madrid, Spain
AT

Ana Torres-Ortuño

Psychologist
Universidad de Murcia
Murcia, Murcia, Spain

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