ArticleResearch and practice in thrombosis and haemostasis2025
TSUBASA study: evaluation of the quality and content of daily life of people with hemophilia A without factor VIII inhibitors on prophylactic treatment with emicizumab.
Article in Research and practice in thrombosis and haemostasis, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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Who cites it
1 citing paper in PubMed.
- More real-world evidence on the impact of emicizumab.Research and practice in thrombosis and haemostasis · 2025Article
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Authors and funding
11 authors.
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No grant is acknowledged in the PubMed record.
Abstract
Background: Hemophilia A (HA) negatively impacts quality of life (QoL). Treatment with the bispecific antibody emicizumab has shown efficacy and safety in people with HA in clinical trials, but long-term QoL data are limited. Objectives: To investigate the QoL of people with HA receiving emicizumab over 97 weeks in the prospective, observational TSUBASA study in Japan. Methods: Data were collected from participants aged ≥6 years with HA without factor VIII inhibitors and caregivers of participants of any age from November 2019 to October 2023. Quality of daily life was measured via the 36-Item Short Form Health Survey, the International Physical Activity Questionnaire, the Work Productivity and Activity Impairment Questionnaire and Classroom Impairment Questionnaire: Hemophilia Specific, and a survey-based questionnaire evaluating daily life, completed by the participant and their caregiver. Results: Overall, 104 participants aged ≥6 years were enrolled. The median (range) age was 39.0 (6-73) years. Eighty-five (81.7%) participants had severe HA; 21 (20.2%) had target joints. The 36-Item Short Form Health Survey scores were mostly unchanged across the study period and comparable with Japanese national standard values. The proportion of participants engaging in high physical activity increased from 20.2% to 27.3% between baseline and week 97. The Work Productivity and Activity Impairment Questionnaire and Classroom Impairment Questionnaire: Hemophilia Specific scores were generally stable. The questionnaires showed improvements in activity, motivation for work/school, and bleed anxiety, as judged by participants and caregivers. Conclusion: QoL outcomes remained largely unchanged across the study period. Notable improvements were observed in physical activity levels, motivation for work/school, and anxiety related to bleeding, as reported by participants and caregivers.
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