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Guideline-based indicators for adult patients with myelodysplastic syndromes.


ABSTRACT: 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.

SUBMITTER: Stojkov K 

PROVIDER: S-EPMC7448599 | biostudies-literature | 2020 Aug

REPOSITORIES: biostudies-literature

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Guideline-based indicators for adult patients with myelodysplastic syndromes.

Stojkov Kristina K   Silzle Tobias T   Stussi Georg G   Schwappach David D   Bernhard Juerg J   Bowen David D   Čermák Jaroslav J   Dinmohamed Avinash G AG   Eeltink Corien C   Eggmann Sabrina S   Fenaux Pierre P   Germing Ulrich U   Haschke Manuel M   Hellstrom-Lindberg Eva E   Heger Monika M   van de Loosdrecht Arjan A AA   Passweg Jakob J   Pfeilstöcker Michael M   Platzbecker Uwe U   Malcovati Luca L   de Almeida António Medina AM   Mittelman Moshe M   Morgenthaler Christine C   Steensma David P DP   Santini Valeria V   Stauder Reinhard R   Symeonidis Argiris A   Schär Sämi S   Maddox Charlotte C   de Witte Theo T   Bohlius Julia J   Bonadies Nicolas N  

Blood advances 20200801 16


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  ...[more]

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