Abstract Number: PB0505
Meeting: ISTH 2021 Congress
Background: The World Federation of Hemophilia (WFH) World Bleeding Disorders Registry (WBDR) is designed to fill gaps in hemophilia care and knowledge that exist globally. The WBDR is a tool for clinicians to collect real world data on patient clinical care and quality of life, and a tool to empower people with hemophilia (PWH) to manage their own care and treatment. The WFH will be introducing myWBDR – a mobile application for PWH participating in the WBDR through the participating hemophilia treatment centers.
Aims: To collect bleed and other patient-reported outcome (PRO) data in the WBDR.
Methods: myWBDR is designed to track bleeds, associated pain, treatments, and health status using EQ-5D-5L and the Patient Reported Outcomes, Burdens, and Experiences (PROBE) questionnaires (Table). Initially, myWBDR will be available in English, French, Hindi, Spanish, and Vietnamese.
|Hemophilia Treatment||Hemophilia Health-related Quality of Life||General Health Status|
|Bleed history: Location of bleed, frequency, access to treatment at time of bleed.||Pain: chronic/acute, interference, occurrence||Mobility|
|Pain level: Pain associated with a bleed event.||Independence: limitations, impact on activities of daily living||Self-care|
|Treatment record: infusion log, dose, frequency, reason for treatment, location of treatment received.||Education: attainment, attendance||Usual Activities|
|Employment: duration, underemployment, attendance||Pain / Discomfort|
|Family Life: marriage, children||Anxiety / Depression|
|Mobility: assistance required, impairment||VAS (visual analog scale)|
Results: myWBDR is undergoing field testing in non-WBDR PWH and will follow with a testing cohort of PWH within the WBDR. Implementation will be regional, starting with 5 countries (2 regions) in Q2 2021. myWBDR is a simple tool, allowing users to record accurate bleeds and treatment in under 1 minute. The inclusion of the EQ-5D-5L and PROBE questionnaires, both available in a large number of languages, will allow users to track changes in their health status over time. Both myWBDR and myPROBE include an off-line feature so data can be entered at anytime and offer simple data visualization on bleeds (number, location), level of pain and health-status.
Conclusions: Integration of PRO via the myWBDR will allow PWH to play an active role in their care and treatment. With the 360-degree data, researchers can better understand hemophilia and work to improve quality of care and treatment for PWH around the world. A data dashboard for PWH to visualize and compare their personal data is in development.
To cite this abstract in AMA style:Youttananukorn T, Coffin D, Diop S, Hermans C, Konkle B, Lambert C, Noone D, O'Hara J, Pierce G, W Skinner M, Iorio A. Incorporating Patient Reported Outcomes into Clinical Practice: A 360-degree Clinical Evaluation for Better Care and Treatment of People with Hemophilia through myWBDR and myPROBE [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/incorporating-patient-reported-outcomes-into-clinical-practice-a-360-degree-clinical-evaluation-for-better-care-and-treatment-of-people-with-hemophilia-through-mywbdr-and-myprobe/. Accessed September 29, 2023.
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