Physical Activity and Treatment Adherence in Persons With Hemophilia Receiving Standard Half-Life (SHL) vs. Extended Half-Life (EHL) Replacement Factor VIII (FVIII): Findings from the HemACTIVE Patient Survey
ISTH Academy. Skinner M. 07/07/19; 263397; PB0210 Topic: Hemophilia - Basic
Mr. Mark Skinner
Mr. Mark Skinner
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Physical Activity and Treatment Adherence in Persons with Hemophilia Receiving Standard Half-Life (SHL) vs. Extended Half-Life (EHL) Replacement Factor VIII (FVIII): Findings from the HemACTIVE Patient Survey

M. Skinner1,2, J. O'Hara3,4, D. Nugent5
1Institute for Policy Advancement Ltd, Washington, D.C., United States, 2McMaster University, Hamilton, Canada, 3HCD Economics, Daresbury, United Kingdom, 4University of Chester, Chester, United Kingdom, 5Children's Hospital of Orange County, University of California at Irvine, Irvine, United States

Main Topic: Hemophilia and Bleeding (including Transfusion)
Category: Hemophilia - Basic

Background: Prophylaxis with replacement FVIII is standard of care for hemophilia but frequent injections contribute to a treatment burden that can lead to poor adherence resulting in increased bleeding risk. The introduction of EHL products is poised to transform hemophilia healthcare by reducing this burden and enabling PWH to meet their personal activity goals.
Aims: The HemACTIVE patient survey was used to understand the impact of EHL vs. SHL treatments on physical activity, treatment satisfaction, and adherence.
Methods: Persons with moderate/severe hemophilia A (PWH), aged 2-65 years (caregivers for PWH < 18 years), were given a 25-minute, IRB-approved, web-based questionnaire. PWH were recruited from rare disease panels from the EU and US from March to May 2018.
Results: Participant characteristics (n = 209) 76% PWH severe, 72% ≥ 18, 82% on prophylaxis. Overall, 55% received SHL products, 42% EHL, 11% plasma, 2% unknown. EHL products were more commonly used in Italy (52%) than US (40%) and France (33%) and by younger adults, 18-30 years (54%) than children/adolescents (36%) or older adults (38%). A 5-level scale was used to report activity levels. Within activity categories of lightly active/inactive, active, or extremely/very active, the relative proportion of EHL users increased with activity level (34% vs. 44% vs. 50%, respectively) vs SHL (58% vs. 53% vs. 52%, respectively). In measures of adherence, PWH were more likely to infuse as directed if they were using EHL products than SHL products (55% vs. 34%). Only 2% of EHL users reported frequently missing infusions or changing their infusion schedules, compared with 16% of SHL users.
Conclusions: Where EHL FVIII products have been utilized by PWH for prophylaxis, study data suggests PWH using EHL are more active and more adherent to prescribed regimens. These data provide important patient-relevant outcomes data to support clinical and technology assessments.

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