The WFH Virtual Summit was a series of live and recorded sessions providing an opportunity for the community to connect from the comfort of office or home. All sessions have been recorded and are available now for post-summit viewing. Lay member of WFH Board of Directors, Deon York, provided an overview of the multidisciplinary programme, which included sessions on quality of life, the redefinition of prophylaxis, in a new era characterized by improved prophylaxis targets and outcomes and the impact of challenges of bleeding disorders in women and girls.
The full programme covered keynotes and many concurrent sessions. Professional multidisciplinary tracks were programmed for nurses and psychosocial, dental, lab science and muscoskeletal practitioners. A key part of the sharing of latest research were the interactive ePoster sessions.
As a leading research group in the bleeding disorders community, HCD Economics published at the WFH Virtual Summit, presenting latest data from the CHESS series of socio-economic surveys (CHESS US, CHESS US + and CHESS II). Tom Burke from HCD Economics hemophilia team was lead author for two posters accepted for the eposter session. Links to the posters are available now and Tom is available for post-summit discussion and explanation of the findings published.
The background and objectives of the CHESS US (United States) and CHESS US + (United States plus) studies are firmly rooted in the commitment of HCD Economics and University of Chester to generate evidence in support of proactive advocacy, contributing to the understanding of the unmet need and burden of severe hemophilia A across the United States, including the healthcare system, US individuals and society. The study recruited over 900 patients and data drawn from their participation resulted in the calculation direct and indirect costs, quality of life scores and level of work and activity impairment amongst other outcomes. The studies collect detailed information on patient demographics, treatment history and direct resource utilization including existing treatments, consultations, hospitalizations and concomitant conditions. Numerous research questions will be addressed to this valuable data source and results from analysis will be submitted for future publication.
CHESS II, was conducted across 8 European countries and recruited 787 patients, of which over 300 provided self-reported data upon caregivers, work loss costs and quality of life. All themes central to the WFH Virtual summit. The CHESS II poster published a descriptive analysis which resulted from a collaboration between HCD Economics, Freeline Therapeutics and the University of Chester. The study was drawn from CHESS II data on relative costs associated with reducing hemophilia severity.
Further research work from HCD Economics was also presented. Jamie O’Hara, CEO of HCD Economics, was lead author on a poster that reported the result of a Discreet Choice Experiment (DCE) which demonstrated that quality of life estimates for the same health state (calculated from preference-based instruments such as EQ-5D) derived from people with hemophilia may be valued higher compared to the general population.
Nanxin Li of Uniqure Inc. was lead author working with the HCD Economics team and other academic collaborators including the Mossakowski Medical Research Centre (Warsaw), University of Sheffield, University of Washington (Seattle) and University of Chester, on a poster that presented the results from a lifetime decision analytic model, which informed on the economic burden of hemophilia B.
The authors can provide links to all posters published at the WFH Virtual Summit, Tom Burke can coordinate any requests for links and welcomes the opportunity to discuss the results and introduce those interested to the relevant researcher within HCD Economics.
For more information on the work undertaken and recently published at the WFH Virtual Summit – please contact Tom Burke, firstname.lastname@example.org