Inicio / Hematología / Abstracts de hematología / Impact of sickle cell disease…

Impact of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY)

0 / 5 (0 votos)
Impact of sickle cell disease on patientsʼ daily lives, symptoms reported, and disease management strategies: Results from the international Sickle Cell World Assessment Survey (SWAY)

American Journal of Hematology

Fecha de publicación: 2 de diciembre de 2020

DOI: https://doi.org/10.1002/ajh.26063

Autores: Ifeyinwa Osunkwo, Biree Andemariam, Caterina P. Minniti, Baba P. D. Inusa, Fuad El Rassi, Beverley Francis‐Gibson, Alecia Nero, Cassandra Trimnell, Miguel R. Abboud, Jean‐Benoît Arlet, Raffaella Colombatti, Mariane de Montalembert, Suman Jain, Wasil Jastaniah,Erfan Nur, Marimilia Pita,Laurie DeBonnett, Nicholas Ramscar, Tom Bailey, Olivera Rajkovic‐Hooley, John James

Background: Sickle cell disease (SCD) is a genetic disorder, characterized by hemolytic anemia and vaso‐occlusive crises (VOCs). Data on the global SCD impact on quality of life (QoL) from the patient viewpoint are limited. The international Sickle Cell World Assessment Survey (SWAY) aimed to provide insights into patient‐reported impact of SCD on QoL. This cross‐sectional survey of SCD patients enrolled by healthcare professionals and advocacy groups assessed disease impact on daily life, education and work, symptoms, treatment goals, and disease management. Opinions were captured using a Likert scale of 1‐7 for some questions; 5‐7 indicated “high severity/impact.” Two thousand one hundred and forty five patients (mean age 24.7 years [standard deviation (SD) = 13.1], 39% ≤18 years, 52% female) were surveyed from 16 countries (six geographical regions). A substantial proportion of patients reported that SCD caused a high negative impact on emotions (60%) and school achievement (51%) and a reduction in work hours (53%). 

Leer más

Comentarios

Para dejar un comentario antes debes iniciar sesión:

¿No tienes una cuenta?

Regístrate a través de éste enlace.