title: Access to allogeneic hematopoietic SCT for patients with MDS or relapsed AML treated according to protocols of the Dutch Childhood Oncology Group.
abstract: To investigate whether all patients in need of an allogeneic hematopoietic SCT (HSCT) are offered one, we retrospectively investigated the policy for all children diagnosed with myelodysplastic syndrome (n=90) or relapsed AML (n=75) between 1998 and 2008. These children are registered at diagnosis and treated according to protocols of the Dutch Childhood Oncology Group, which provides accurate disease incidence data and protocol-indicated appropriateness for HSCT. For 48 (30%) patients, a family donor was identified; for 90 (57%) patients, an unrelated donor (UD) search was performed; and for 21 (13%) patients, no UD search was initiated. Reasons for not initiating an UD search include: progressive disease (n=10), conserve quality of life (n=1), stable disease (n=3), immunosuppressive therapy (n=2), patient death (n=3), patient lives abroad (n=1) and second relapse (n=1). On the basis of the time interval between date of diagnosis and date of death/last follow-up, for eight (5%) patients, it may be questioned why an UD search was not performed. The fact that 95% of all children are given the option of an allogeneic HSCT is encouraging and reasons not to transplant seem fair in most cases.
authors.affiliation: Europdonor Foundation, Plesmanlaan 1b, Leiden, The Netherlands. joris@europdonor.nl
authors.forename: M M
authors.initials: MM
authors.lastname: Jöris
authors.forename: M B
authors.initials: MB
authors.lastname: Bierings
authors.forename: R M
authors.initials: RM
authors.lastname: Egeler
authors.forename: F H J
authors.initials: FH
authors.lastname: Claas
authors.forename: J J
authors.initials: JJ
authors.lastname: van Rood
authors.forename: M
authors.initials: M
authors.lastname: Oudshoorn
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D005260:Female; D006297:Health Services Accessibility; D018380:Hematopoietic Stem Cell Transplantation / Q000706:statistics & numerical data*; D006801:Humans; D015470:Leukemia, Myeloid, Acute / Q000628:therapy*; D009190:Myelodysplastic Syndromes / Q000628:therapy*; D009426:Netherlands; D012008:Recurrence; D012189:Retrospective Studies; D014184:Transplantation, Homologous; D061349:Unrelated Donors