European countries. Methods: This was a cross-sectional study carried out in the United Kingdom, France and Germany. Data was collected from July 2015 to November 2015. Healthcare costs (hospitalizations, emergencies, medical tests, drugs consumption, visits to GPs and specialists, health material and healthcare transport) and non-healthcare costs (social services and informal care) were identified and valued (reference year: 2014). EQ-5D instrument, Barthel index and Zarit score were also used to reflect the burden and the social impact of the disease beyond the healthcare cost. Results: 86 children with SMA were included, 26.7% of them were Type I and 73.3% were Type II or III. The annual average costs associated with SMA reached 54,295V in UK, 32,042V in France and 52,985V in Germany. Direct non-healthcare costs ranged between 65%-80% of the total cost associated with SMA disease in the three countries analysed. More precisely, the cost associated with informal care was 40,526V (74% of the total cost) for UK, 26,619V (80% of the total cost) for France and 39,926V (77% of the total cost) for Germany. Regarding HRQOL, it was observed that in France and United Kingdom children have a very poor quality of life (0.11 and 0.16, respectively, using time trade-off (TTO) utility score). On contrary, German children had a significantly better quality of life with a TTO of 0.53. Conclusions: SMA represents a considerably high socioeconomic impact both in terms of healthcare and social costs and in reduced HRQOL of children affected. Our analysis may help to design more efficient and equitable policies, with special emphasis on the need to increase the resources and the support provided to the families.
OBJECTIVES: To identify prognostic factors associated with longer transplant hospitalization in pediatric allogeneic hematopoietic cell transplant (allo-HCT) recipients with adenovirus (AdV) infection. METHODS: AdVance is a retrospective, European multinational study into allo-HCT recipients who develop AdV infection. Here we focus on predictors of increased length of hospitalization. Review of medical chart data for the six months following allo-HCT identified patients with AdV infection. Fine-Gray multivariate regression models were utilized to identify prognostic factors associated with longer transplant hospitalization in pediatric patients who developed AdV infection following allo-HCT. Models accounted for death as a competing risk and data were censored at one year after allo-HCT. Transplant hospitalization was defined as the time from allo-HCT procedure until hospital discharge. RESULTS: For the transplant hospitalization, median length of stay was 50 days for patients with AdV viremia during the hospitalization (n¼263) versus 34 days for those without AdV viremia (n¼295). Multivariate regression analysis, controlling for age, race, and center effect as a fixed factor, revealed factors independently associated with risk of longer transplant hospitalization: AdV viremia 10,000 copies/mL (HR¼5.26; 95% CI: 3.13-8.33; p<0.0001) or from 1000 to 10,000 copies/mL (HR¼2.08; 95%CI: 1.32-3.33; p¼0.0017); lymphocyte counts <300 cells/mL (HR¼1.67; 95% CI: 1.15-2.38; p¼0.0062); and graft versus host disease (GvHD) grade 3 (HR¼2.86; 95% CI: 1.89-4.35; p<0.0001) or grade 4 (HR¼6.25; 95% CI: 3.33-11.11; p<0.0001). CONCLUSIONS: AdV viremia in pediatric allo-HCT recipients is a strong independent predictor of longer hospital stay following allo-HCT. Higher viral burden is associated with increased risk of prolonged transplant hospitalization, independent of other confirmed risk factors such as low lymphocyte counts or GvHD. Approaches that prevent or mitigate high-level AdV viremia could therefore reduce the healthcare resource burden associated with allo-HCT.
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