{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,22]],"date-time":"2026-04-22T12:17:49Z","timestamp":1776860269071,"version":"3.51.2"},"reference-count":53,"publisher":"American Society of Hematology","issue":"16","content-domain":{"domain":["ashpublications.org"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2020,8,25]]},"abstract":"<jats:p>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 (&amp;gt;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.<\/jats:p>","DOI":"10.1182\/bloodadvances.2020002314","type":"journal-article","created":{"date-parts":[[2020,8,25]],"date-time":"2020-08-25T16:02:24Z","timestamp":1598371344000},"page":"4029-4044","update-policy":"https:\/\/doi.org\/10.1182\/blood.2019cm0000","source":"Crossref","is-referenced-by-count":17,"title":["Guideline-based indicators for adult patients with myelodysplastic syndromes"],"prefix":"10.1182","volume":"4","author":[{"given":"Kristina","family":"Stojkov","sequence":"first","affiliation":[{"name":"Department of Hematology and Central Hematology Laboratory, Inselspital\/Bern University Hospital, and"},{"name":"Department for BioMedical Research, University of Bern, Bern, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tobias","family":"Silzle","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology and Hematology, Cantonal Hospital St. Gallen, St. Gallen, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1667-0637","authenticated-orcid":false,"given":"Georg","family":"Stussi","sequence":"additional","affiliation":[{"name":"Clinic of Hematology, Oncology Institute of Southern Switzerland, Bellinzona, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8668-3065","authenticated-orcid":false,"given":"David","family":"Schwappach","sequence":"additional","affiliation":[{"name":"Swiss Patient Safety Foundation, Zurich, Switzerland;"},{"name":"Institute of Social and Preventive Medicine (ISPM) 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Netherlands;"},{"name":"Department of Public Health, Erasmus University Medical Center, Rotterdam, The Netherlands;"},{"name":"Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Corien","family":"Eeltink","sequence":"additional","affiliation":[{"name":"Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7379-7343","authenticated-orcid":false,"given":"Sabrina","family":"Eggmann","sequence":"additional","affiliation":[{"name":"Department of Physiotherapy, Bern University Hospital, Bern, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pierre","family":"Fenaux","sequence":"additional","affiliation":[{"name":"H\u00f4pital St. Louis, Assistance Publique\u2013H\u00f4pitaux de Paris\/Paris University, Paris, France;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulrich","family":"Germing","sequence":"additional","affiliation":[{"name":"Department of Hematology, Oncology and Clinical Immunology, Heinrich Heine University, D\u00fcsseldorf, Germany;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Manuel","family":"Haschke","sequence":"additional","affiliation":[{"name":"Clinical Pharmacology and Toxicology, Department of General Internal Medicine, Bern University Hospital, and"},{"name":"Institute of Pharmacology, University of Bern, Bern, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eva","family":"Hellstrom-Lindberg","sequence":"additional","affiliation":[{"name":"Center for Hematology and Regenerative Medicine, Department of Medicine, Karolinska University Hospital, Huddinge, Stockholm, Sweden;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Monika","family":"Heger","sequence":"additional","affiliation":[{"name":"Department of Hematology and Central Hematology Laboratory, Inselspital\/Bern University Hospital, and"},{"name":"Department of Medical Oncology, Inselspital\/Bern University Hospital, University of Bern, Bern, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Arjan A.","family":"van de Loosdrecht","sequence":"additional","affiliation":[{"name":"Amsterdam University Medical Center, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7092-3351","authenticated-orcid":false,"given":"Jakob","family":"Passweg","sequence":"additional","affiliation":[{"name":"Department of Hematology, University Hospital Basel, Basel, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Pfeilst\u00f6cker","sequence":"additional","affiliation":[{"name":"3rd Medical Department, Hanusch Hospital, Vienna, Austria;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Uwe","family":"Platzbecker","sequence":"additional","affiliation":[{"name":"Medical Clinic and"},{"name":"Policlinic 1, Hematology and Cellular Therapy, Leipzig University Hospital, Leipzig, Germany;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Luca","family":"Malcovati","sequence":"additional","affiliation":[{"name":"Department of Molecular Medicine, University of Pavia, Pavia, Italy;"},{"name":"Hematology Oncology, Istituto di Ricovero e Cura a Carattere Scientifico (IRCCS) S. Matteo Hospital, Pavia, Italy;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ant\u00f3nio Medina","family":"de Almeida","sequence":"additional","affiliation":[{"name":"Hospital da Luz, Lisboa, Portugal;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Moshe","family":"Mittelman","sequence":"additional","affiliation":[{"name":"Department of Medicine A, Tel Aviv Sourasky (Ichilov) Medical Center and Sackler Medical Faculty, Tel Aviv University, Tel Aviv-Yafo, Israel;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine","family":"Morgenthaler","sequence":"additional","affiliation":[{"name":"Department of Hematology and Central Hematology Laboratory, Inselspital\/Bern University Hospital, and"},{"name":"Department of Medical Oncology, Inselspital\/Bern University Hospital, University of Bern, Bern, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5130-9284","authenticated-orcid":false,"given":"David P.","family":"Steensma","sequence":"additional","affiliation":[{"name":"Department of Medical Oncology, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Valeria","family":"Santini","sequence":"additional","affiliation":[{"name":"MDS Unit, Hematology, Azienda Ospedaliero Universitaria Careggi, University of Florence, Florence, Italy;"},{"name":"Fondazione Italiana Sindromi Mielodisplastiche (FISiM), Florence, Italy;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8993-9561","authenticated-orcid":false,"given":"Reinhard","family":"Stauder","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine V (Hematology and Oncology), Innsbruck Medical University, Innsbruck, Austria;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3685-3473","authenticated-orcid":false,"given":"Argiris","family":"Symeonidis","sequence":"additional","affiliation":[{"name":"Division of Hematology, Department of Internal Medicine, Medical School, University of Patras, Patras, Greece;"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"S\u00e4mi","family":"Sch\u00e4r","sequence":"additional","affiliation":[{"name":"SAKK Coordinating Center, Bern, Switzerland; and"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlotte","family":"Maddox","sequence":"additional","affiliation":[{"name":"SAKK Coordinating Center, Bern, Switzerland; and"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Theo","family":"de Witte","sequence":"additional","affiliation":[{"name":"Department of Tumor Immunology, Nijmegen Center for Molecular Life Sciences, Radboud University Medical Centre, Nijmegen, The Netherlands"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julia","family":"Bohlius","sequence":"additional","affiliation":[{"name":"Institute of Social and Preventive Medicine (ISPM) and"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8761-2066","authenticated-orcid":false,"given":"Nicolas","family":"Bonadies","sequence":"additional","affiliation":[{"name":"Department of Hematology and Central Hematology Laboratory, Inselspital\/Bern University Hospital, and"},{"name":"Department for BioMedical Research, University of Bern, Bern, Switzerland;"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"234","published-online":{"date-parts":[[2020,8,25]]},"reference":[{"issue":"8883","key":"2020082511344819100_B1","doi-asserted-by":"crossref","first-page":"1317","DOI":"10.1016\/0140-6736(93)92244-N","article-title":"Effect of clinical guidelines on medical practice: a systematic review of rigorous 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