Cause of death and excess mortality in patients with lower-risk myelodysplastic syndromes (MDS): A report from the European MDS registry

Krzysztof Madry, Karol Lis, Pierre Fenaux, David Bowen, Argiris Symeonidis , Moshe Mittelman, Reinhard Stauder, Jaroslav Cermak, Guillermo Sanz, Mette Skov Holm, Agnes Guerci-Bresler, Dominic Culligan, Laurence Sanhes, Ioannis Kotsianidis, Corine van Marrewijk, Simon Crouch, Theo de Witte, Alexandra Smith

Research output: Contribution to journalArticlepeer-review


Information on causes of death (CoDs) and the impact of myelodysplastic syndromes (MDS) on survival in patients with lower-risk MDS (LR-MDS) is limited. A better understanding of the relationship between disease characteristics, clinical interventions and CoDs may improve outcomes of patients with LR-MDS. We prospectively collected data on patients with LR-MDS in the European MDS registry from 2008 to 2019. Clinical, laboratory and CoDs data were obtained. To examine MDS-specific survival, relative survival (RS) was estimated using national life tables. Of 2396 evaluated subjects, 900 died (median overall survival [OS]: 4.7 years; median follow-up: 3.5 years). The most common CoDs were acute myeloid leukaemia/MDS (20.1%), infection (17.8%) and cardiovascular disease (CVD; 9.8%). Patients with isolated del(5q) and with red cell transfusion needed during the disease course, had a higher risk of fatal CVD. The 5-year OS was 47.3% and the 5-year RS was 59.6%, indicating that most patients died due to their underlying MDS. Older patients (aged >80 years) and the lowest-risk patients were more likely to die from competing causes. This study shows that MDS and its related complications play crucial role in the outcome of patients with LR-MDS.
Original languageEnglish
Pages (from-to)451-461
Number of pages11
JournalBritish Journal of Haematology
Issue number4
Early online date6 Nov 2022
Publication statusPublished - 1 Feb 2023

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