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Presentation Details
Healthcare Resource Utilization in People with Hemophilia Treated Within vs.External to U.S.Hemophilia Treatment Center Network Clinics: An Update from the CHESS US Study

Enrico Ferri Grazzi1, Ming Lim2, Nicole Crook3, Maria Santaella4, Michael Recht4, 5, Adam Giermasz6, Jonathan Roberts7, Randall Curtis8.

1Federation of Hemophilia Associations (FedEmo), Milan, Italy.2University of Utah, Salt Lake City, UT, USA.3Center for Inherited Blood Disorders, Orange, CA, USA.4National Bleeding Disorders Foundation, New York, NY, USA.5Yale School of Medicine, New Haven, CT, USA.6University of California, Davis, CA, USA.7Bleeding & Clotting Disorders Institute, Peoria, IL, USA.8Factor VIII Computing, Walnut Creek, CA, USA

Abstract


Introduction:  People with hemophilia (PwH) in the United States (US) may receive comprehensive care through the Hemophilia Treatment Center Network (USHTCN).  Little information on non-USHTCN clinics is available. Characterizing outcomes and healthcare resource utilization (HCRU) in PwH treated in non-USHTCN clinics is key to improving health outcomes. This analysis aimed to characterize clinical and HCRU outcomes for PwH treated at USHTCN and non-USHTCN clinics and identify potential elements driving inconsistencies across settings.  Methods:   Cost of Hemophilia: A Socio-Economic Survey (CHESS) US is a cross-sectional study, collecting data from health care providers (HCPs) and PwH in the US across USHTCN and non-USHTCN clinics. This analysis compared clinical and HCRU outcomes in PwH across settings. Results are reported as mean (SD) and n (%) and described separately for severe/non-severe PwH. Differences were assessed via Chi-square and Mann-Whitney U tests.  Results:  Overall, 838 PwH (non-USHTCN n=746, 89.0%; USHTCN n=92, 11.0%) were included. Significantly more USHTCN PwH were severe vs. non-USHTCN (62.0% vs. 38.2%; p<0.01). More non-USHTCN PwH were uninsured (n=103, 13.8% vs. n=3, 3.3%; p<0.01).   Mild/moderate: Age was similar (36.4 vs. 34.0 years). USHTCN PwH had a higher mean weight (92.4 kg) compared to non-USHTCN counterparts (79.6 kg; Table 1). Coinfection was more prevalent in the USHTCN cohort (11.4% vs. 2.8%). However, 19.3% of non-USHTCN PwH had anemia/fatigue vs. 5.7% (Table 1). Similar annual bleed rates (ABR) were observed, however non-USHTCN PwH had more target joints (TJ) compared to USHTCN (0.9 vs. 0.3: Table 1). Non-USHTCN PwH needed more nurse/hematologist consultations vs. USHTCN (5.6 vs. 2.7) and significantly more had ≥1 bleed-related hospital visit in the 12m prior (17.1% vs. 2.9%). Non-USHTCN PwH had significantly longer hospitalizations (13.5 vs. 2.0 days) in the 12m prior (Table 1).     Severe: Age and weight were similar (Table 2). Coinfection was more prevalent in the USHTCN cohort (22.8% vs. 4.9%). More non-USHTCN PwH 20.0% had anemia/fatigue vs. 0.0%; and 13.7% vs. 0% had anxiety (Table 2). ABR was similar, however non-USHTCN PwH had more TJs compared to USHTCN (0.9 vs. 0.4) despite lower recorded chronic joint damage (problem joints; Table 2). Non-USHTCN PwH needed significantly more nurse/hematologist consultations vs. USHTCN (6.1 vs. 3.3) and significantly more had ≥1 bleed-related hospital visit in the 12m prior (22.5% vs. 3.5%). Non-USHTCN PwH had longer hospitalizations (14.0 vs. 4.0 days), more hospital (1.4 vs. 0.4) and emergency room visits (1.2 vs.0.5) in the 12m prior (Table 2).  Conclusions: The non-USHTCN and USHTCN cohorts had similar demographics, however more non-USHTCN were uninsured.  Recorded ABR were similar across the cohorts. However non-USHTCN had more TJs than USHTCN counterparts, suggesting suboptimal bleeding control/detection, particularly into joints. The non-USHTCN cohort had higher prevalence of anemia/fatigue in non-USHTCN PwH and significantly increased hospital visits, hospitalization duration, and much higher reliance of on emergency services. Higher HCRU is likely to increase cost of care and out of pocket expenses, particularly in under/un-insured PwH. USHTCN staff often act as insurance navigators, helping PwH find appropriate coverage, reducing the economic burden on PwH and the healthcare system.

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