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.

Center of Hematology and Bone Marrow Transplantation Fundeni Clinical Institute Bucharest Romania

CIBERONC Instituto Carlos 3 Madrid Spain

Clinic of Hematology Clinical Center of Vojvodina University of Novi Sad Novi Sad Serbia

Department of Clinical Hematology Institute of Hematology and Blood Transfusion Praha Czech Republic

Department of Hematology Aarhus University Hospital Aarhus Denmark

Department of Hematology Hospital Universitario y Politécnico La Fe Valencia Spain

Department of Hematology Oncology and Clinical Immunology Universitätsklinik Düsseldorf Düsseldorf Germany

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

Department of Hematology Radboud University Medical Center Nijmegen Netherlands

Department of Internal Medicine 5 Medical University Innsbruck Innsbruck Austria

Department of Medicine A Tel Aviv Sourasky Medical Center and Sackler Medical Faculty Tel Aviv University Tel Aviv Israel

Department of Medicine Division of Hematology Karolinska Institutet Stockholm Sweden

Department of Medicine Division of Hematology University of Patras Medical School Patras Greece

Department of Tumor Immunology Nijmegen Center for Molecular Life Sciences Radboud University Medical Center Nijmegen Netherlands

Epidemiology and Cancer Statistics Group Department of Health Sciences University of York New York United Kingdom

Fondazione GIMEMA Onlus Rome Italy

Service d'Hématologie Center Hospitalier Universitaire Brabois Vandoeuvre Nancy France

Service d'Hématologie Hôpital Saint Louis Assistance Publique des Hôpitaux de Paris and Université Paris 7 Paris France

Servicio d'Hematología Servicio de Salud del Principado de Asturias Oviedo Oviedo Spain

St James's Institute of Oncology Leeds Teaching Hospitals Leeds United Kingdom

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