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Leukemia. 2018 Jun;32(6):1380-1392. doi: 10.1038/s41375-018-0089-x. Epub 2018 Mar 6.

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

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Department of Internal Medicine V (Hematology and Oncology), Medical University Innsbruck, Innsbruck, Austria.
Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, New York, United Kingdom.
Department of Internal Medicine V (Hematology and Oncology), Medical University Innsbruck, Innsbruck, Austria.
Service d'Hématologie, Hôpital Saint-Louis, Assistance Publique des Hôpitaux de Paris (AP-HP) and Université Paris 7, Paris, France.
Department of Medicine, Division of Hematology, University of Patras Medical School, Patras, Greece.
Department of Hematology, Hospital Universitario y Politécnico La Fe, Valencia, Spain.
CIBERONC, Instituto Carlos III, Madrid, Spain.
Department of Clinical Hematology, Institute of Hematology & Blood Transfusion, Praha, Czech Republic.
Department of Medicine A, Tel Aviv Sourasky (Ichilov) Medical Center and Sackler Medical Faculty, Tel Aviv University, Tel Aviv, Israel.
Department of Medicine, Division of Hematology, Karolinska Institutet, Stockholm, Sweden.
Department of Hematology, Radboud University Medical Center, Nijmegen, Netherlands.
Department of Hematology, Aarhus University Hospital, Aarhus, Denmark.
Department of Hematology, Oncology and Internal Medicine, Warszawa Medical University, Warszawa, Poland.
Department of Hematology Oncology, Fondazione IRCCS Policlinico San Matteo, University of Pavia, Pavia, Italy.
Center of Hematology and Bone Marrow Transplantation, Fundeni Clinical Institute, Bucharest, Romania.
Department of Hematology, Oncology and Clinical Immunology, Universitätsklinik Düsseldorf, Düsseldorf, Germany.
Clinic of Hematology - Clinical Center of Vojvodina, University of Novi Sad, Novi Sad, Serbia.
Service d'Hématologie, Center Hospitalier Universitaire Brabois Vandoeuvre, Nancy, France.
Servicio d'Hematología, Servicio de Salud del Principado de Asturias Oviedo, Oviedo, Spain.
Fondazione GIMEMA Onlus, Rome, Italy.
St. James's Institute of Oncology, Leeds Teaching Hospitals, Leeds, United Kingdom.
Department of Tumor Immunology - Nijmegen Center for Molecular Life Sciences, Radboud University Medical Center, Nijmegen, Netherlands.


In myelodysplastic syndromes (MDS), health-related quality of life (HRQoL) represents a relevant patient-reported outcome, which is essential in individualized therapy planning. Prospective 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.

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