Characteristics, treatment and outcomes of myelodysplastic syndrome in two Finnish hospital districts

IntroductionMyelodysplastic syndromes (MDS) are hematologic malignancies characterized by changes in haematopoiesis and a high risk for progressing into acute myeloid leukemia (AML). In this retrospective registry based real-world study, from two Finnish hospital data lakes we characterized specialised health care treated MDS patients, their treatment landscape, outcomes, and healthcare resource utilization. MethodsThis study consisted of adult patients with MDS diagnosed in either of two hospital districts in Finland: hospital district of Southwest Finland (HDSF) and Pirkanmaa hospital district (PHD). Two different time windows were used depending on data availability: 1.1.2010-31.12.2019 (HDSF) and 1.1.2012-31.12.2019 (PHD). Electronic health record data, including demographics, diagnoses, and medications was accessed via the respective hospital data lakes and dates and causes of death data was collected from Statistics Finland. ResultsWe identified 565 adult MDS patients, of whom 424 received active life-prolonging treatment at specialized healthcare and 141 were treated with watchful observation or supportive care at primary care. 72 patients were treated with azacitidine and 26 patients received allogeneic hematologic stem cell transplant. Median overall survival for the specialty healthcare treated patients was 27,5 months (95 confidence interval [CI] 24,1-35,2) and costs per patient year were 17 563{euro}. ConclusionThis hospital data lake-based analysis identified patient groups with differing disease severity and need for treatment. High-risk, azacitidine treated patients have suboptimal outcomes and high costs, highlighting the need for new therapeutic approaches to prevent disease progression and reduce disease burden.