title: Shared decision making in the management of children with newly diagnosed immune thrombocytopenia.
abstract: This study aimed to examine the treatment decision-making process for children hospitalized with newly diagnosed immune thrombocytopenia (ITP). Using focus groups, we studied children with ITP, parents of children with ITP, and health care professionals, inquiring about participants' experience with decision support and decision making in newly diagnosed ITP. Data were examined using thematic analysis. Themes that emerged from children were feelings of "anxiety, fear, and confusion"; the need to "understand information"; and "treatment choice," the experience of which was age dependent. For parents, "anxiety, fear, and confusion" was a dominant theme; "treatment choice" revealed that participants felt directed toward intravenous immune globulin (IVIG) for initial treatment. For health care professionals, "comfort level" highlighted factors contributing to professionals' comfort with offering options; "assumptions" were made about parental desire for participation in shared decision making (SDM) and parental acceptance of treatment options; "providing information" was informative regarding modes of facilitating SDM; and "treatment choice" revealed a discrepancy between current practice (directed toward IVIG) and the ideal of SDM. At our center, families of children with newly diagnosed ITP are not experiencing SDM. Our findings support the implementation of SDM to facilitate patient-centered care for the management of pediatric ITP.
authors.affiliation: *Division of Pediatric Medicine and the Pediatric Outcomes Research Team †Department of Pediatrics ¶Division of Hematology/Oncology, Hospital for Sick Children, University of Toronto ‡Department of Psychiatry and Child Health Evaluative Sciences §University of Toronto, Dalla Lana School of Public Health ∥Institute of Medical Science, University of Toronto, Toronto **Department of Pediatrics, Division of Hematology/Oncology, McMaster University, Hamilton, Canada #Department of Community and Family Medicine, Dartmouth Medical School, New Hampshire, UK.
authors.forename: Carolyn E
authors.initials: CE
authors.lastname: Beck
authors.forename: Katherine M
authors.initials: KM
authors.lastname: Boydell
authors.forename: Elaine
authors.initials: E
authors.lastname: Stasiulis
authors.forename: Victor S
authors.initials: VS
authors.lastname: Blanchette
authors.forename: Hilary
authors.initials: H
authors.lastname: Llewellyn-Thomas
authors.forename: Catherine S
authors.initials: CS
authors.lastname: Birken
authors.forename: Vicky R
authors.initials: VR
authors.lastname: Breakey
authors.forename: Patricia C
authors.initials: PC
authors.lastname: Parkin
mesh_terms: D000293:Adolescent; D001007:Anxiety / Q000523:psychology; D002648:Child; D003221:Confusion / Q000523:psychology; D003657:Decision Making; D005239:Fear / Q000523:psychology; D005260:Female; D017144:Focus Groups; D006470:Hemorrhage / Q000523:psychology / Q000628:therapy; D006801:Humans; D008297:Male; D010290:Parents / Q000523:psychology; D010358:Patient Participation / Q000523:psychology*; D000297:Psychology, Adolescent; D002666:Psychology, Child; D016553:Purpura, Thrombocytopenic, Idiopathic / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy*; D012042:Registries