Myelodysplastic syndromes (MDSs) represent a heterogeneous group of hematological stem cell disorders with an increasing burden on health care systems. Evidence-based MDS guidelines and recommendations (G/Rs) are published but do not necessarily translate into better quality of care if adherence is not maintained in daily clinical practice. Guideline-based indicators (GBIs) are measurable elements for the standardized assessment of quality of care and, thus far, have not been developed for adult MDS patients. To this end, we screened relevant G/Rs published between 1999 and 2018 and aggregated all available information as candidate GBIs into a formalized handbook as the basis for the subsequent consensus rating procedure. An international multidisciplinary expert panel group (EPG) of acknowledged MDS experts (n = 17), health professionals (n = 7), and patient advocates (n = 5) was appointed. The EPG feedback rates for the first and second round were 82% (23 of 28) and 96% (26 of 27), respectively. A final set of 29 GBIs for the 3 domains of diagnosis (n = 14), therapy (n = 8), and provider/infrastructural characteristics (n = 7) achieved the predefined agreement score for selection (>70%). We identified shortcomings in standardization of patient-reported outcomes, toxicity, and geriatric assessments that need to be optimized in the future. Our GBIs represent the first comprehensive consensus on measurable elements addressing best practice performance, outcomes, and structural resources. They can be used as a standardized instrument with the goal of assessing, comparing, and fostering good quality of care within clinical development cycles in the daily care of adult MDS patients.

3rd Medical Department Hanusch Hospital Vienna Austria

Amsterdam University Medical Center Vrije Universiteit Amsterdam Amsterdam The Netherlands

Center for Hematology and Regenerative Medicine Department of Medicine Karolinska University Hospital Huddinge Stockholm Sweden

Clinic of Hematology Oncology Institute of Southern Switzerland Bellinzona Switzerland

Clinical Pharmacology and Toxicology Department of General Internal Medicine Bern University Hospital and

Department for BioMedical Research University of Bern Bern Switzerland

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

Department of Hematology and Central Hematology Laboratory Inselspital Bern University Hospital and

Department of Hematology Leeds Teaching Hospitals Leeds United Kingdom

Department of Hematology Oncology and Clinical Immunology Heinrich Heine University Düsseldorf Germany

Department of Hematology University Hospital Basel Basel Switzerland

Department of Internal Medicine 5 Innsbruck Medical University Innsbruck Austria

Department of Medical Oncology and Hematology Cantonal Hospital St Gallen St Gallen Switzerland

Department of Medical Oncology Dana Farber Cancer Institute Harvard Medical School Boston MA

Department of Medical Oncology Inselspital Bern University Hospital University of Bern Bern Switzerland

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

Department of Molecular Medicine University of Pavia Pavia Italy

Department of Physiotherapy Bern University Hospital Bern Switzerland

Department of Public Health Erasmus University Medical Center Rotterdam The Netherlands

Department of Research and Development Netherlands Comprehensive Cancer Organisation Utrecht The Netherlands

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

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

Fondazione Italiana Sindromi Mielodisplastiche Florence Italy

Hematology Oncology Istituto di Ricovero e Cura a Carattere Scientifico S Matteo Hospital Pavia Italy

Hôpital St Louis Assistance Publique Hôpitaux de Paris Paris University Paris France

Hospital da Luz Lisboa Portugal

Institute of Pharmacology University of Bern Bern Switzerland

Institute of Social and Preventive Medicine and

MDS Unit Hematology Azienda Ospedaliero Universitaria Careggi University of Florence Florence Italy

Medical Clinic and

Policlinic 1 Hematology and Cellular Therapy Leipzig University Hospital Leipzig Germany

SAKK Coordinating Center Bern Switzerland; and

Swiss Patient Safety Foundation Zurich Switzerland

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