Guideline-based indicators for adult patients with myelodysplastic syndromes.

Stojkov, Kristina; Silzle, Tobias; Stussi, Georg; Schwappach, David; Bernhard, Juerg; Bowen, David; Čermák, Jaroslav; Dinmohamed, Avinash G; Eeltink, Corien; Eggmann, Sabrina; Fenaux, Pierre; Germing, Ulrich; Haschke, Manuel; Hellstrom-Lindberg, Eva; Heger, Monika; van de Loosdrecht, Arjan A; Passweg, Jakob; Pfeilstöcker, Michael; Platzbecker, Uwe; Malcovati, Luca; ... (2020). Guideline-based indicators for adult patients with myelodysplastic syndromes. Blood advances, 4(16), pp. 4029-4044. American Society of Hematology 10.1182/bloodadvances.2020002314

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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.

Item Type:

Journal Article (Original Article)

Division/Institute:

04 Faculty of Medicine > Department of General Internal Medicine (DAIM) > Clinic of General Internal Medicine
04 Faculty of Medicine > Department of Haematology, Oncology, Infectious Diseases, Laboratory Medicine and Hospital Pharmacy (DOLS) > Clinic of Medical Oncology
04 Faculty of Medicine > Department of Haematology, Oncology, Infectious Diseases, Laboratory Medicine and Hospital Pharmacy (DOLS) > Clinic of Haematology and Central Haematological Laboratory
04 Faculty of Medicine > Pre-clinic Human Medicine > BioMedical Research (DBMR) > Unit Childrens Hospital > Forschungsgruppe Hämatologie (Erwachsene)
04 Faculty of Medicine > Pre-clinic Human Medicine > BioMedical Research (DBMR)
04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine (ISPM)

UniBE Contributor:

Stojkov, Kristina; Schwappach, David; Bernhard, Jürg; Haschke, Manuel Martin; Bohlius, Julia and Bonadies, Nicolas

Subjects:

600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services

ISSN:

2473-9529

Publisher:

American Society of Hematology

Language:

English

Submitter:

Andrea Flükiger-Flückiger

Date Deposited:

27 Aug 2020 12:48

Last Modified:

27 Aug 2020 17:39

Publisher DOI:

10.1182/bloodadvances.2020002314

PubMed ID:

32841339

BORIS DOI:

10.7892/boris.146159

URI:

https://boris.unibe.ch/id/eprint/146159

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