Guidelines for the treatment of myelodysplastic syndromes (MDSs) are generally similar across expert groups, and the differences between them do not account for the nonadherence to expert guidance, according to research published in the International Journal of Environmental Research and Public Health. Patient-reported outcome measures should be included in the development of international guidelines, according to the authors.

MDS represents a spectrum of clonal disorders with a wide variance in clinical outcomes and prognosis. While some patients with MDS may have few symptoms, others may progress to acute myeloid leukemia, with drastic implications for both survival and quality of life.

Because MDS has a heterogeneous clinical presentation, patients require individualized treatment for optimal outcomes. Advances in understanding how to treat patients in specific circumstances has, in the past several decades, led to established clinical guidelines in MDS treatment. The advent of treatment guidelines in MDS has helped to improve both clinical outcomes and patient quality of life, and to reduce the rates of non-useful clinical interventions.

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The methodology for how MDS treatment guidelines are developed is, however, not always clear. While these guidelines are developed by panels of experts, the clinical trial data often used to form guidelines may not apply to individual patients with variable clinical and care needs. For this review, researchers evaluated previous guideline-adherence research to raise awareness about the importance of individualizing treatment in the MDS setting.

The researchers evaluated guideline recommendations around diagnosis, treatment of lower-risk MDS, and treatment of higher-risk MDS, which were published by 4 leading cancer networks. These included the European Leukemia Net (ELN; 2014 guideline), the National Comprehensive Cancer Network (NCCN; 2020 guideline), the German Society of Hematology and Oncology (DGHO; 2021 guideline), and the European Society for Clinical Oncology (ESMO; 202 guideline).

The authors noted that the 4 treatment guidelines evaluated were similar, and could not explain variance in treatment adherence in individual cases. They added, further, that patient-reported outcome measures are not yet fully integrated into guideline development, which may hinder improvements in the quality of patient care.

“Our work emphasizes that proper patient management should go beyond guidelines and should involve shared decision-making,” the authors wrote. “Guidelines should be considered a useful framework rather than a dogma.”


Kasprzak A, Kaivers J, Nachtkamp K, et al. Guidelines for myelodysplastic syndromes: converting evidence into action? Int J Environ Res Public Health. 2021;18(14):7629. doi:10.3390/ijerph18147629