Haemophilia : the official journal of the World Federation of Hemophilia · 2026
Quality of Life in People With Haemophilia: Results in the Framework of a Nationwide Registry in Colombia.
СтатьяНазвание и аннотация: Перевод в очереди
Обработка статьи · этапы, ошибки и управление
Загрузка состояния…
Ошибки и ограничения
История · было → стало
Состояние обновляется каждые 5 секунд, пока блок открыт. Процент показывается только там, где известен объём работы. Пауза останавливает продолжение этапа; текущий запрос к источнику может завершиться.
Hernández Vargas Juliana Alexandra, Linares Adriana, Solano María Helena, Casas Claudia, Fernández Deaza Ginna Paola, Acuña Lizbeth
Аннотация
INTRODUCTION: Real-world data on health-related quality of life (HRQoL) and its predictors in people with haemophilia (PWH) are crucial to evaluate the effect of comprehensive management. It may be useful for clinicians and interdisciplinary teams to better target their interventions. We aimed to characterise global HRQoL and its associated factors in PWH within the Colombian health system.
METHODS: A cross-sectional study on PWH included in the Colombian Registry of Haemophilia and other Coagulopathies (CRHOC) from November 2021 to April 2022. Global HRQoL was measured using culturally validated versions of HemoLatin-QoL (adults) and CHO-KLAT 2.0 in children and their parents. A descriptive analysis and simple and multiple linear regressions were used to identify the factors associated with global HRQoL.
RESULTS: Five hundred and eighty-three participants were analysed (452 adults and 131 children). A total of 93% were men with a median age of 36 years (IQR: 27-51) in adults and 12 years (IQR: 9-15) in children. Most people were affiliated with the contributory insurance scheme, 98% of children were students, and 63% of adults were employed. A total of 79% had haemophilia A, 44% of adults and 63% of children had a severe form, and prophylaxis was the most used treatment. Median HRQoL was 83 points (IQR: 65-95) in adults and 72 points (IQR: 63-81) in children. In both subpopulations, experiencing pain, haemarthrosis and belonging to the subsidised insurance scheme worsened HRQoL. In adults, higher education, being employed or a student, physical activity, and being treated with Emicizumab significantly improved HRQoL. Prophylaxis had a significant protective effect in adults with severe disease.
CONCLUSION: Pain, haemarthrosis and being affiliated with the subsidised scheme negatively modified HRQoL in adults and children. Prophylaxis improved HRQoL in severe cases. These findings help clinicians to better focus interdisciplinary management according to patient self-reported outcomes.
METHODS: A cross-sectional study on PWH included in the Colombian Registry of Haemophilia and other Coagulopathies (CRHOC) from November 2021 to April 2022. Global HRQoL was measured using culturally validated versions of HemoLatin-QoL (adults) and CHO-KLAT 2.0 in children and their parents. A descriptive analysis and simple and multiple linear regressions were used to identify the factors associated with global HRQoL.
RESULTS: Five hundred and eighty-three participants were analysed (452 adults and 131 children). A total of 93% were men with a median age of 36 years (IQR: 27-51) in adults and 12 years (IQR: 9-15) in children. Most people were affiliated with the contributory insurance scheme, 98% of children were students, and 63% of adults were employed. A total of 79% had haemophilia A, 44% of adults and 63% of children had a severe form, and prophylaxis was the most used treatment. Median HRQoL was 83 points (IQR: 65-95) in adults and 72 points (IQR: 63-81) in children. In both subpopulations, experiencing pain, haemarthrosis and belonging to the subsidised insurance scheme worsened HRQoL. In adults, higher education, being employed or a student, physical activity, and being treated with Emicizumab significantly improved HRQoL. Prophylaxis had a significant protective effect in adults with severe disease.
CONCLUSION: Pain, haemarthrosis and being affiliated with the subsidised scheme negatively modified HRQoL in adults and children. Prophylaxis improved HRQoL in severe cases. These findings help clinicians to better focus interdisciplinary management according to patient self-reported outcomes.