Health-related quality of life in lower-risk MDS patients compared with age- and sex-matched reference populations: A European LeukemiaNet study

Reinhard Stauder*, Ge Yu, Karin A. Koinig, Tim Bagguley, Pierre Fenaux, Argiris Symeonidis, Guillermo Sanz, Jaroslav Cermak, Moshe Mittelman, Eva Hellström-Lindberg, Saskia Langemeijer, Mette Skov Holm, Krzysztof Madry, Luca Malcovati, Aurelia Tatic, Ulrich Germing, Aleksandar Savic, Corine Van Marrewijk, Agnès Guerci-Bresler, Elisa LuñoJackie Droste, Fabio Efficace, Alex Smith, David Bowen, Theo De Witte

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review


In myelodysplastic syndromes (MDS), health-related quality of life (HRQoL) represents a relevant patient-reported outcome, which is essential in individualized therapy planning. Prospecive data on HRQoL in lower-risk MDS remain rare. We assessed HRQOL by EQ-5D questionnaire at initial diagnosis in 1690 consecutive IPSS-Low/Int-1 MDS patients from the European LeukemiaNet Registry. Impairments were compared with age- and sex-matched EuroQol Group norms. A significant proportion of MDS patients reported moderate/severe problems in the dimensions pain/discomfort (49.5%), mobility (41.0%), anxiety/depression (37.9%), and usual activities (36.1%). Limitations in mobility, self-care, usual activities, pain/discomfort, and EQ-VAS were significantly more frequent in the old, in females, and in those with high co-morbidity burden, low haemoglobin levels, or red blood cells transfusion need (p < 0.001). In comparison to age- and sex-matched peers, the proportion of problems in usual activities and anxiety/depression was significantly higher in MDS patients (p < 0.001). MDS-related restrictions in the dimension mobility were most prominent in males, and in older people (p < 0.001); in anxiety/depression in females and in younger people (p < 0.001); and in EQ-VAS in women and in persons older than 75 years (p < 0.05). Patients newly diagnosed with IPSS lower-risk MDS experience a pronounced reduction in HRQoL and a clustering of restrictions in distinct dimensions of HRQoL as compared with reference populations.

Original languageEnglish
Pages (from-to)1380-1392
Number of pages13
Issue number6
StatePublished - 1 Jun 2018


FundersFunder number
Austrian Science Found I 1576
Horizon 2020 research and innovation programPHC-2014- 634789
Horizon 2020 Framework Programme
Horizon 2020PHC-2014-634789, 634789


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