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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

T. Youttananukorn1, D. Coffin1, S. Diop2, C. Hermans3, B. Konkle4, C. Lambert5, D. Noone6, J. O'Hara7, G. Pierce1, M.W Skinner8,9, A. Iorio10

1World Federation of Hemophilia, Montreal, Canada, 2Cheikh Anta Diop University and Centre National de Transfusion Sanguine, Dakar, Senegal, 3Division of Haematology, Cliniques universitaires Saint-Luc, Université catholique de Louvain (UCLouvain), Leuven, Belgium, 4Bloodworks Northwest, Seattle, United States, 5Division of Haematology, Cliniques universitaires Saint-Luc, Université catholique de Louvain (UCLouvain), Brussels, Belgium, 6European Hemophilia Consortium, Brussels, Belgium, 7HCD Economics, London, United Kingdom, 8Institute for Policy Advancement Ltd, Washington DC, United States, 9Department of Health Research Methods, Evidence, and Impact, McMaster University, Ontario, Canada, 10McMaster University, Hamilton, Canada

Abstract Number: PB0505

Meeting: ISTH 2021 Congress

Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Clinical

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
myWBDR myPROBE EQ-5D-5L
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)

myWBDR and Patient-Reported Outcome Data

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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