title: Patterns and influences in health-related quality of life in children with immune thrombocytopenia: A study from the Dallas ITP Cohort.
abstract: BACKGROUND
  Relationships between clinical/demographic factors and health-related quality of life (HRQoL) in childhood immune thrombocytopenia (ITP) remain poorly understood. Recent studies reveal conflicting information about factors that contribute to HRQoL.
  
  
  METHODS
  This was a prospective, single-institution, cohort study of newly diagnosed children with ITP. Serial evaluations of HRQoL were performed using the Kid's ITP Tools (KIT), scored from 0 (worst) to 100 (best), at enrollment and 1 week, 6 months, and 12 months following diagnosis. All visits included bleeding severity grading. Relationships between HRQoL and platelet count, treatment, bleeding severity, and course of disease were examined.
  
  
  RESULTS
  A total of 99 children with newly diagnosed ITP were evaluable for analysis. KIT scores were low at diagnosis for parents (median 26, range 15-43) and children (median 65, range 55-81) and were not influenced by age or platelet count. At diagnosis, children who received treatment had lower platelet counts (P = 0.005), more severe hemorrhage (P < 0.0125), and lower HRQoL by parent, child, and proxy reporting (P < 0.05). Oral bleeding negatively impacted proxy-reported disease burden at diagnosis (P = 0.01). Persistence of disease and lower platelet counts at 6 and 12 month visits were the only factors noted to consistently impact quality of life beyond diagnosis for both parents and children.
  
  
  CONCLUSIONS
  HRQoL is low at diagnosis but significantly improves over time. Patients with ongoing disease and lower platelet counts continue to have significant disease burden.
authors.affiliation: Department of Pediatrics, Children's Medical Center Dallas, University of Texas Southwestern Medical Center, Dallas, Texas.
authors.forename: Adolfo
authors.initials: A
authors.lastname: Flores
authors.affiliation: Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
authors.forename: Robert J
authors.initials: RJ
authors.lastname: Klaassen
authors.affiliation: Department of Pediatrics, Children's Medical Center Dallas, University of Texas Southwestern Medical Center, Dallas, Texas.
authors.forename: George R
authors.initials: GR
authors.lastname: Buchanan
authors.affiliation: Department of Pediatrics, Columbia University, New York, New York.
authors.forename: Cindy E
authors.initials: CE
authors.lastname: Neunert
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005260:Female; D006801:Humans; D008297:Male; D011446:Prospective Studies; D016553:Purpura, Thrombocytopenic, Idiopathic / Q000150:complications* / Q000628:therapy; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013781:Texas
keywords: bleeding severity; childhood ITP; health-related quality of life