Factors Involved in Health-Related Quality of Life in Children with Immune Thrombocytopenia: A Study from the Dallas ITP Cohort
Neunert, Cindy E.
Klaassen, Robert J.
Buchanan, George R.
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BACKGROUND: Medication costs and side effects, bleeding severity, and activity restrictions may all play a role in parental/child disease burden in childhood ITP. However, the precise factors involved in health-related quality of life (HRQoL) changes reported by these patients and their families are largely unknown. Our aim was to prospectively explore relationships between clinical/demographic factors that may negatively impact HRQoL in childhood ITP during the first year following diagnosis. METHODS: This was a prospective, single-institution study of newly diagnosed children with ITP ages 12 weeks to < 18 years. Serial evaluations of HRQoL were performed using the recently validated Kid’s ITP Tools (KIT) at enrollment and 1 week, 6 months and 12 months following diagnosis. All visits included a CBC and bleeding severity grade. Demographic and baseline characteristics were summarized using descriptive statistics, with Kruskal-Wallis and Mann-Whitney tests performed when necessary. Multiple linear regression analysis was used to identify significant associations of patient/parent HRQoL at each study visit. RESULTS: A total of 163 patients with newly diagnosed ITP were evaluated since study commencement, with 96 patients meeting all eligibility criteria. Mean parental disease burden was higher at enrollment (i.e. lower KIT score) compared to child-self and proxy HRQoL scores. HRQoL improved in parent, child and proxy reports between diagnosis and 12 month follow-up, but only parent and proxy reports were statistically significant, with changes in scores between the 1 week and 6 month visits displaying the greatest degree of improvement. There was a considerably higher disease burden present at enrollment for children and parents of children who received drug therapy at diagnosis compared to those who were managed with close observation. Multiple linear regression analysis failed to identify associations of parental disease burden other than drug treatment at enrollment and sustained skin bleeding at 12 months. Alternatively, fatigue, drug treatment, and activity restrictions remained key variables of diminished HRQoL for child and proxy reports. CONCLUSIONS: The findings in this study suggest that in spite of concerns and frustrations with bleeding symptoms, drug treatment, fatigue and activity restrictions, HRQoL in children with ITP is not exceedingly low at diagnosis and shows modest improvement with time.