TY - JOUR
T1 - Guideline-based indicators for adult patients with myelodysplastic syndromes
AU - Stojkov, Kristina
AU - Silzle, Tobias
AU - Stussi, Georg
AU - Schwappach, David
AU - Bernhard, Juerg
AU - Bowen, David
AU - Čermá, J.
AU - Dinmohamed, Avinash G.
AU - Eeltink, Corien
AU - Eggmann, Sabrina
AU - Fenaux, Pierre
AU - Germing, Ulrich
AU - Haschke, Manuel
AU - Hellstrom-Lindberg, Eva
AU - Heger, Monika
AU - Van De Loosdrecht, Arjan A.
AU - Passweg, Jakob
AU - Pfeilstöcker, Michael
AU - Platzbecker, Uwe
AU - Malcovati, Luca
AU - De Almeida, Ant Onio Medina
AU - Mittelman, Moshe
AU - Morgenthaler, Christine
AU - Steensma, David P.
AU - Santini, Valeria
AU - Stauder, Reinhard
AU - Symeonidis, Argiris
AU - Schär, Sämi
AU - Maddox, Charlotte
AU - De Witte, Theo
AU - Bohlius, Julia
AU - Bonadies, Nicolas
N1 - Publisher Copyright:
© 2020 by The American Society of Hematology.
PY - 2020/8/25
Y1 - 2020/8/25
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85091536601&partnerID=8YFLogxK
U2 - 10.1182/bloodadvances.2020002314
DO - 10.1182/bloodadvances.2020002314
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C2 - 32841339
AN - SCOPUS:85091536601
SN - 2473-9529
VL - 4
SP - 4029
EP - 4044
JO - Blood advances
JF - Blood advances
IS - 16
ER -