Adolfo Flores1, Robert J Klaassen2, George R Buchanan1, Cindy E Neunert3. 1. Department of Pediatrics, Children's Medical Center Dallas, University of Texas Southwestern Medical Center, Dallas, Texas. 2. Department of Pediatrics, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada. 3. Department of Pediatrics, Columbia University, New York, New York.
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.
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: David E Schmidt; Katja M J Heitink-Pollé; Bart Mertens; Leendert Porcelijn; Rick Kapur; C Ellen van der Schoot; Gestur Vidarsson; Johanna G van der Bom; Marrie C A Bruin; Masja de Haas Journal: J Thromb Haemost Date: 2021-03-18 Impact factor: 5.824
Authors: David E Schmidt; Pernille Wendtland Edslev; Katja M J Heitink-Pollé; Bart Mertens; Marrie C A Bruin; Rick Kapur; Gestur Vidarsson; C Ellen van der Schoot; Leendert Porcelijn; Johanna G van der Bom; Steen Rosthøj; Masja de Haas Journal: J Thromb Haemost Date: 2020-11-27 Impact factor: 5.824