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Over the history of myelodysplastic neoplasms (MDS), an increasing number of treatment modalities have become available. It is therefore important to assess whether these developments have translated into improved overall survival (OS) for patients. We analyzed data from 1,147 patients in the German MDS registry and observed a progressive improvement in median survival across three diagnostic periods: until 2000 (20 months), 2001–2010 (31 months), and after 2011 (57 months). Patients treated with allogeneic stem cell transplantation (SCT) had the best prognosis with a median survival of 108 months. Over time, both the proportion of patients undergoing allogeneic SCT (6.3% vs. 22.1% vs. 40.0%) and the median age at transplantation (36.5 vs. 52 vs. 61 years) increased. Notably, OS also improved among patients treated with best supportive care (BSC) alone (17 vs. 31 vs. 64 months; p  < 0.001). Multivariate analysis demonstrated that the period of first diagnosis had an independent positive effect on survival. The underlying reasons for this improvement remain unclear, but a multifactorial origin—including improved supportive measures and greater eligibility for allogeneic SCT—must be considered.

Myeloproliferative neoplasms (MPN) are associated with a variety of symptoms that severely impact patients’ quality of life and ability to perform daily activities. Recent studies showed differences in the perception of physician- versus patient-reported symptom burden. However, studies directly comparing patient- and physician-reported ratings are lacking. Here, a retrospective analysis on symptom burden of 3979 MPN patients of the Bioregistry of the German Study Group for MPN was conducted to intra-individually compare physician and patient reports collected at the same time. Cohen’s kappa was calculated to assess the degree of agreement between patient and physician reports. Factors influencing baseline symptom severity were identified using linear regression and adjusted Cox models were calculated to investigate the effect of symptom burden on survival. MPN patients had a high symptom burden, which neither decreased over time nor upon cytoreductive therapy. All symptoms were more frequently reported by patients compared to physicians. Agreement remained low and only slightly improved when considering a higher threshold for patient symptom severity. Patients with severe symptom burden had inferior survival compared to patients with less severe symptoms. Assessment of symptom burden in MPN is therefore insufficient and patient-reported outcome tools need to be implemented into clinical routine.

Myeloproliferative neoplasms (MPN) are associated with a variety of symptoms that severely impact patients’ quality of life and ability to perform daily activities. Recent studies showed differences in the perception of physician- versus patient-reported symptom burden. However, studies directly comparing patient- and physician-reported ratings are lacking. Here, a retrospective analysis on symptom burden of 3979 MPN patients of the Bioregistry of the German Study Group for MPN was conducted to intra-individually compare physician and patient reports collected at the same time. Cohen’s kappa was calculated to assess the degree of agreement between patient and physician reports. Factors influencing baseline symptom severity were identified using linear regression and adjusted Cox models were calculated to investigate the effect of symptom burden on survival. MPN patients had a high symptom burden, which neither decreased over time nor upon cytoreductive therapy. All symptoms were more frequently reported by patients compared to physicians. Agreement remained low and only slightly improved when considering a higher threshold for patient symptom severity. Patients with severe symptom burden had inferior survival compared to patients with less severe symptoms. Assessment of symptom burden in MPN is therefore insufficient and patient-reported outcome tools need to be implemented into clinical routine.