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Guideline-based indicators for adult patients with myelodysplastic syndromes
Kristina Stojkov1,2, Tobias Silzle3, Georg Stussi4
1Department of Hematology and Central Hematology Laboratory, Inselspital/Bern University Hospital, and.
Insights
This study developed 29 guideline-based indicators (GBIs) for myelodysplastic syndromes (MDS) to standardize and improve adult patient care quality. These measurable elements address diagnosis, therapy, and healthcare infrastructure for better MDS management.
Area of Science:
- Hematology
- Quality Improvement
- Clinical Practice Guidelines
Background:
- Myelodysplastic syndromes (MDS) are complex hematological stem cell disorders with significant healthcare burdens.
- Published MDS guidelines and recommendations (G/Rs) often lack consistent adherence in clinical practice, impacting care quality.
- Standardized tools for assessing the quality of care in adult MDS patients were previously undeveloped.
Purpose of the Study:
- To develop the first comprehensive set of guideline-based indicators (GBIs) for adult myelodysplastic syndromes (MDS) patients.
- To establish measurable elements for assessing and improving the quality of MDS care.
- To create a consensus-driven instrument for evaluating diagnosis, therapy, and healthcare infrastructure in MDS management.
Main Methods:
- Screening of MDS G/Rs published between 1999 and 2018 to identify candidate GBIs.
- Aggregation of information into a handbook for a consensus rating procedure.
- International multidisciplinary expert panel group (EPG) review and feedback (17 MDS experts, 7 health professionals, 5 patient advocates) with high response rates (82% and 96%).
Main Results:
- A final set of 29 GBIs was established, achieving a consensus agreement score (>70%).
- These GBIs cover three key domains: diagnosis (14 indicators), therapy (8 indicators), and provider/infrastructural characteristics (7 indicators).
- Shortcomings in standardizing patient-reported outcomes, toxicity assessment, and geriatric evaluations were identified for future optimization.
Conclusions:
- The developed 29 GBIs represent a novel, consensus-based instrument for measuring MDS care quality.
- These GBIs can be utilized to assess, compare, and foster high-quality care in adult MDS patients.
- The indicators provide a standardized framework for improving clinical development and daily care practices in MDS.
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.
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