Long-term outcomes of patients with refractory cytopenia of childhood under observation only

Abstract: Refractory cytopenia of childhood (RCC) describes an entity of well-recognized bone marrow failure defined by persistent cytopenia, dysplastic changes, and a unique histopathological pattern in the bone marrow. Although hematopoietic stem cell transplantation (HSCT) is generally indicated...

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Main Authors: Beatrice Drexler, Stephan Schwarz-Furlan, Irith Baumann, Martina Rudelius, Peter Nöllke, Dirk Lebrecht, Senthilkumar Ramamoorthy, Natalia Rotari, Axel Karow, Shinsuke Hirabayashi, Fabian Beier, Yvonne Lisa Behrens, Gudrun Göhring, Reinhard Kalb, Marcin W. Wlodarski, Brigitte Strahm, Miriam Erlacher, Charlotte M. Niemeyer, Ayami Yoshimi
Format: Article
Language:English
Published: Elsevier 2025-08-01
Series:Blood Advances
Online Access:http://www.sciencedirect.com/science/article/pii/S2473952925003490
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Summary:Abstract: Refractory cytopenia of childhood (RCC) describes an entity of well-recognized bone marrow failure defined by persistent cytopenia, dysplastic changes, and a unique histopathological pattern in the bone marrow. Although hematopoietic stem cell transplantation (HSCT) is generally indicated for patients with severe cytopenia or abnormal karyotype, a subset of patients with RCC may be candidates for an observational approach. We evaluated the long-term outcome of patients with RCC without evidence of a genetic predisposition who had a normal karyotype and had not received HSCT or immunosuppressive therapy within 2 years from diagnosis. The median age at diagnosis of the 100 patients analyzed was 10.9 years (range 1.4-17.3); 84% presented with a hypocellular bone marrow. Clonal evolution with abnormal karyotype occurred in 3 patients (3%), and 1 case progressed to myelodysplastic syndrome with excess blasts. Three patients (3%) developed paroxysmal nocturnal hematuria. Overall, 9 patients (9%) received HSCT, and the 5- and 10-year HSCT-free survival was 94% and 88%, respectively. At last follow-up, all patients were alive with a median follow-up time of 7.2 years. These results indicate that an observational approach is safe for selected patients with RCC with a normal karyotype after an exclusion of a germ line predisposition syndrome. However, persistence of cytopenia in most of these patients underscores the importance of long-term surveillance and transition to adult hematology care. This trial was registered at www.clinicaltrials.gov as #NCT00047268 and #NCT00662090.
ISSN:2473-9529