Hemophilia Treatment Center Growth and Performance Metrics Overview
Explore the growth and performance metrics of Hemophilia Treatment Centers, including data on patient satisfaction, treatment center expansion, and national surveillance efforts related to blood safety and hemophilia complications.
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Presentation for CANN 340 B Commission Testimony Diane Nugent ,MD June 13, 2018
UDC = CDC Surveillance for Blood Safety and hemophilia complications. UCD = Universal Data Collection System 2
Hemophilia Treatment Center 340B Growth: California, HI, NV 2004: 11/11 CA HTCs using 340B Prices, 14/14 in Region IX by 2018 14 12 340B 10 FRP Tracking 8 Medicaid Factor Reimbursement Rate Patient Satisfactio n 6 4 2 TA Seminars 0 Source: JR Baker, Evaluation Design for Hemophilia Treatment Center 340B Drug Pricing Programs. Doctoral Dissertation UCLA 2013 Patient Satisfaction Surveys: 2006, 2010, 2015, 2018 3
HHS/HRSA/CDC Performance Metrics CDC Surveillance - national registries monitor joint and blood pathogen complications, mortality, and inhibitor development Healthy People 2020 National objectives on Blood Disorders and Blood Safety HRSA performance measures - for special needs children and adults throughout the continuum National Patient Satisfaction Survey using CAHPS domains Hemophilia and Thrombosis Data Set 25 year patient demographic & utilization trends Hemophilia Utilization Group Study modelling predictors of cost and health outcomes Fellowship programs reduce hematologist workforce shortages Training Programs for Nursing, Social Work. Physical Therapy, and Genetic Counselors
A year in life of The California Comprehensive Care Centers: 12 federally funded Hemophilia Treatment Centers in California :Care for over 4000 patients with bleeding disorders (14% of patients in USA!) 1530+ diagnostic work ups annually 2800+ home therapy program 2160+ annual evaluations 2800+ comprehensive exams annually 3100 have PCP; 2350 summary to PCP (>90%) 130+ carrier tests (28% increase)
