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Patterns and influences in health‐related quality of life in children with immune thrombocytopenia: A study from the Dallas ITP Cohort
Author(s) -
Flores Adolfo,
Klaassen Robert J.,
Buchanan George R.,
Neunert Cindy E.
Publication year - 2017
Publication title -
pediatric blood and cancer
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.116
H-Index - 105
eISSN - 1545-5017
pISSN - 1545-5009
DOI - 10.1002/pbc.26405
Subject(s) - medicine , immune thrombocytopenia , cohort , prospective cohort study , pediatrics , disease , quality of life (healthcare) , cohort study , health related quality of life , platelet , nursing
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.