Objectives: The purpose of this study was to examine hematologist and patient perspectives about the side-effects of the corticosteroid treatment of immune thrombocytopenic purpura (ITP) and their perspectives about the patient's risk for bleeding. The specific aim was to compare patient and hematologist perspectives and, if a difference was documented, the implications of that difference. We hypothesized that patients with ITP may have more concern about corticosteroid side-effects and less concern about serious bleeding than hematologists.
Methods: We surveyed 80 patients in the Oklahoma ITP Registry and all 83 hematologists in Oklahoma about the occurrence and severity of 18 corticosteroid side-effects and risks for serious bleeding.
Results: Response rates were 80% (patients) and 71% (hematologists). Responses of patients and hematologists were significantly different from each other regarding both the frequency of severe corticosteroid side-effects and the risk of serious bleeding. For 13 of the 18 corticosteroid side-effects, patients reported more frequent occurrence of severe symptoms than hematologists (P < 0.05); physicians reported more frequent occurrence for one side-effect (P < 0.05). Conversely, 69% and 93% of hematologists reported being very worried about serious bleeding when responding to two case scenarios describing patients with platelet counts of 10 000/microL and 5000/microL (P < 0.05), compared with only 16 (31%) of 51 patients whose lowest platelet count had been <10 000/microL.
Conclusion: Awareness of the different opinions about corticosteroid side-effects and risk for bleeding between ITP patients and hematologists may improve management decisions.