Kirsi Manz, Florian H. Heidel, Steffen Koschmieder, Rudolf Schlag, Jörg Lipke, Frank Stegelmann, Martin Griesshammer, Martine Klausmann, Carl Crodel, Andreas Hochhaus, Holger Schulz, Joachim R. Göthert, Haifa Al-Ali, Heiko Becker, Andreas Reiter, Gernot Beutel, Kim Kricheldorf, Tim H. Brümmendorf, Wolfgang Hoffmann, Konstanze Döhner & Susanne Isfort On behalf of the German Study Group for Myeloproliferative Neoplasms (GSG-MPN)
Abstract
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.