Guideline-based indicators for adult patients with myelodysplastic syndromes

Kristina Stojkov, Tobias Silzle, Georg Stussi, David Schwappach, Juerg Bernhard, David Bowen, J. Čermá, Avinash G. Dinmohamed, Corien Eeltink, Sabrina Eggmann, Pierre Fenaux, Ulrich Germing, Manuel Haschke, Eva Hellstrom-Lindberg, Monika Heger, Arjan A. Van De Loosdrecht, Jakob Passweg, Michael Pfeilstöcker, Uwe Platzbecker, Luca MalcovatiAnt Onio Medina De Almeida, Moshe Mittelman, Christine Morgenthaler, David P. Steensma, Valeria Santini, Reinhard Stauder, Argiris Symeonidis, Sämi Schär, Charlotte Maddox, Theo De Witte, Julia Bohlius, Nicolas Bonadies*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review


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. Guidelinebased 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 5 17), health professionals (n 5 7), and patient advocates (n 5 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 (n514), therapy (n 5 8), and provider/infrastructural characteristics (n 5 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.

Original languageEnglish
Pages (from-to)4029-4044
Number of pages16
JournalBlood advances
Issue number16
StatePublished - 25 Aug 2020


FundersFunder number
Schweizerische Arbeitsgemeinschaft für Klinische KrebsforschungSAKK 33/18
Swiss Cancer Research FoundationHSR-4085-11-2016


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