Abstracts – Page 5

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

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 March 12, 2022

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.

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.

View Poster: myWBDR and myPROBE

Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia

Jackson S, Sheridan B, Gue D, Lyons S, Waines R, Ireland T, Pete D, Iorio A, Walsh L, Skinner M, Germini F.
Feasibility of Integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a Clinical Care Pathway to Facilitate Transformation to a Value-based Health Care Model in Hemophilia [abstract]. Res Pract Thromb Haemost. 2021;5(Suppl 2). https://abstracts.isth.org/abstract/feasibility-of-integrating-probe-patient-reported-outcomes-burdens-and-experiences-into-a-clinical-care-pathway-to-facilitate-transformation-to-a-value-based-health-care-model-in-hemophilia/ . Accessed July 2, 2021.

Introduction

The PROBE survey was developed by patients, hemophilia caregivers and methodological experts as a stand-alone cross-sectional instrument with multistep validation and control group data. While not developed for use in clinics, it measures important value-based health outcomes including health status, mobility, independence, acute/chronic pain and overall quality of life. We report initial results from a feasibility project using PROBE during routine care to enable patients to provide outcome measures to clinical teams and improve quality, value and experience of hemophilia care.

Methods

Three patients from the British Columbia Adult Bleeding Disorders Provincial Program were identified to guide the BC steering group and the McMaster PROBE database teams. The steering group endorsed including 6 additional vocational survey items to the 30 question PROBE instrument. An anonymized link was sent 1-2 weeks pre-appointment and upon completion, patients were given the option to share survey results with the clinical team. All patients were sent an evaluation form post-visit.

Results

25 survey links were sent and 17 patients completed in full. 4 had technical issues sharing the survey and 13 independently completed and shared the survey. 7 patients completed a 10 question evaluation post-survey with 86% indicating PROBE covered all areas that they felt were important to address, 100% were willing to take it again, and 86 % felt the PROBE responses had a very beneficial or beneficial impact on the team members ability to have a meaningful discussion during the visit.

Conclusions

It is feasible to embed PROBE into routine care from a patient and clinician perspective for longitudinal single patient or population-based outcome tracking. Next steps include enhancing the interface for clinician viewing, allowing patients to trend their results over time and allowing the option for patients to compare their results to selected peer groups within the National/Global PROBE system.

View Poster: Vancouver Study

Quality of life of people with hemophilia in Nicaragua: A case series with PROBE Survey

López A, Uriarte X, Leytón I, Campos J, Aguilera S.
(2022), (Poster) Quality of life of people with hemophilia in Nicaragua: A case series with PROBE Survey, WFH Congress 2022.

View Poster: Calidad de Vida Nicaragua

PROBE Results Show Continued Burden of Disease in Canadians with Hemophilia A and B

Page D, Kucher A, Geremini F.
PP-72 (1160482) PROBE results show continued burden of disease in Canadians with severe haemophilia A and B. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537

Introduction

Prophylaxis with recombinant factor concentrates has been the standard of care for severe hemophilia A and B in Canada since the early 1990s and has resulted in significantly improved quality-of-life; however, the Patient Reported Outcomes, Burdens and Experiences (PROBE) study reports that burden of disease remains significant compared to the general population.

Methods

Patients reporting their home infusions through the patient portal of the Canadian Bleeding Disorders Registry are asked via email to complete the online PROBE questionnaire. 420 questionnaires have been completed by people with severe hemophilia A (PwSHA), 39.2% of the 1,069 severe patients identified in the Canadian Hemophilia Registry, and by 81 people with severe hemophilia B (PwSHB), 40.5% of the 200 severe patients. The survey was also completed by 198 controls with no bleeding disorder.

Results

88% of the PwSHA (369/420) and 89% (72/81) of PwSHB reported treating with regular prophylaxis. 28.1% of the PwSHA and 37% of the PwSHB reported using mobility aids or assistive devices in the last 12 months compared to 9% of the controls. 66% of the PwSHA and 75% of the PwSHB reported using pain medication in the last 12 months compared to 55% of the controls. 61% and 51% respectively of the PWSHA and PWSHB reported acute pain in the last 12 months compared to 34% of controls. 65% and 77% suffered from chronic pain, compared to 38% of controls. Rates of those with hemophilia acute pain decreased with age, except in those over 65. Chronic pain, however, increased with age, affecting 37% of severe patients aged 11-21 years, but 85% of those aged 45-64 years. 60% of PwSHA and 83% of PwSHB aged 22 to 64 years were employed either full-time or part-time compared to 78% of controls. In those same age groups, 13%, 7% and 5% of PwSHA, PwSHB and controls respectively reported being unemployed.

Conclusions

People with severe hemophilia of all ages, despite good access to prophylaxis, continue to experience a significantly higher burden of disease compared to the general population.

View Poster: PROBE Results Show Continued Burden of Disease

Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE

Kucher A, Gaitán C, Skinner M, Cruz M, Escobar A, Alfonso O, Iorio A, germini F, Parrish R, Sevestre M. LR-07.01 (1160466) Integration of the Mexican Registry of Coagulopathies (RMC) with PROBE. (2022), Abstracts. Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537

Introduction

Registro Mexicano de Coagulopatías (RMC) is a national registry app connected to the Federation of Hemophilia of the Mexican Republic (FHRM) for people living with hemophilia (PWH) or other bleeding disorders or caregivers to report infusions and bleeds. Patient Reported Outcomes Burdens and Experiences Study (PROBE) is a validated global patient-reported quality of life questionnaire for PWH or individuals without a bleeding disorder available in app (myPROBE), web, or paper format. These two tools were linked such that the RMC login can be used to access PROBE using a single sign-on (SSO) authentication scheme.RMC users are followed longitudinally, receive yearly reminders to complete PROBE, and receive reports on changes to their PROBE score. This connectivity will make data collection more user-friendly, useful and efficient; provide personal health information feedback; and increase the number of people reporting without the need for dual reporting.

Methods

The Health Information Research Unit team at McMaster University and Design2Code Inc. developed an online survey using Windows.net and React Native technologies and implemented the OAuth 2 Client protocol in PROBE while FHRM implemented OAuth 2 Server in RMC. OAuth 2 is the authentication protocol that allows for SSO.

Results

In February 2020, RMC and PROBE developed a linkage between the two data sets for the online platform and mobile application (iOS and Android). In October 2020 the collaboration went live with a soft launch, allowing RMC users to take the PROBE survey using RMC. The applications have a WebView where the PROBE website is loaded and the users sign in with their RMC credentials. To date 32 PWH have initiated data collection.

Conclusions

The number of PWH reporting annually via PROBE will increase, revealing individual and population-level changes. With the demonstrated functionality and successful integration, plans are underway for wider rollout and promotion. The collaboration will provide the FHRM with valuable patient-reported outcome data on pain, education and employment, need for mobility aids, and impact of hemophilia on activities of daily living. These data in combination with data from the PROBE global data set may be used to support further access and improvements in clinical and patient outcomes.

View Presentation: Integration of the Mexican Registry

Feasibility of integrating PROBE (Patient Reported Outcomes, Burdens and Experiences) into a clinical care pathway to facilitate transformation to a Value-Based Health Care Model in hemophilia

Jackson S, Sheridan B, Due D, Lyons S, Waines R, Ireland T, Pete D, Iorio A, Walsh L, Skinner M, Germini F.
F. PP-60 (1160288) Feasibility of integrating PROBE (patient reported outcomes, burdens and experiences) into a clinical care pathway to facilitate transformation to a value-based health care model in haemophilia. (2022), Abstracts.Haemophilia, 28: 5-97. https://doi.org/10.1111/hae.14537

Introduction

The PROBE survey was developed by patients, hemophilia caregivers and methodological experts as a stand-alone cross-sectional instrument
with multistep validation and control group data. While not developed for use in clinics, it measures important value-based health outcomes
including health status, mobility, independence, acute/chronic pain and overall quality of life. We report initial results from a feasibility project
using PROBE during routine care to enable patients to provide outcome measures to clinical teams and improve quality, value and experience of
hemophilia care.

Methods

Three patients from the British Columbia Adult Bleeding Disorders Provincial Program were identified to guide the BC steering group and the
McMaster PROBE database teams. The steering group endorsed including 6 additional vocational survey items to the 30 question PROBE
instrument. An anonymized link was sent 1-2 weeks pre-appointment and upon completion, patients were given the option to share survey
results with the clinical team. All patients were sent an evaluation form post-visit.

Results

96 survey links were sent and 44 patients completed in full. 4 had technical issues sharing the survey and 44 independently completed and
shared the survey. 24 patients completed a 10 question evaluation post-survey with 96% indicating PROBE covered all areas that they felt were
important to address, 96% were willing to take it again, and 79% felt the PROBE responses had a very beneficial or beneficial impact on the team
members ability to have a meaningful discussion during the visit.

Conclusions

It is feasible to embed PROBE into routine care from a patient and clinician perspective for longitudinal single patient or population-based
outcome tracking. Next steps (in progress) include enhancing the interface for clinician viewing, allowing patients to trend their results over time
and allowing the option for patients to compare their results to selected peer groups within the National/Global PROBE system.

View Poster: Vancouver Study

Association between ageing and health status in persons leaving with hemophilia and controls without a bleeding disorder

International Society on Thrombosis & Haemophilia (ISTH, SSC) 2020

Poster Abstract # PB 1012
Citation: Germini F, O’Callaghan S, Chai-Adisaksopha C, Curtis R, Frick N, Nichol M, Noone D, O’Mahony B, Page D, Stonebraker J, Skinner M, Iorio A. Association Between Aging and Health Status in Persons Leaving with Hemophilia and Controls Without a Bleeding Disorder – Insights from the PROBE Study [abstract]. Res Pract Thromb Haemost. 2020; 4 (Suppl 1).

For Abstract Click HERE (PB 1012)

Education in people with Hemophilia – Insights from the PROBE Study

World Federation of Hemophilia Congress (2020)

Poster Abstract # MTD‐PP‐045 (548)
Citation: Kucher A, Noone D, Chai-Adisaksopha C, Curtis R, Frick N, Iorio A, Nichol M, O’Mahony B, Page D, Skinner M, Stonebraker J. Education in people with Hemophilia – Insights from the PROBE Study (2020), Abstracts. Haemophilia, 26: 3-140. doi:10.1111/hae.13941

For Abstract Click HERE (MTD‐MP‐045 (548))

3 apps in 1: MyCBDR, myWAPPS and myPROBE

World Federation of Hemophilia Congress (2020)

Poster Abstract # MTD‐PP‐025 (377)
Citation: Page D, 3 apps in 1: MyCBDR, myWAPPS and myPROBE. (2020), Abstracts. Haemophilia, 26: 3-140. doi:10.1111/hae.13941

For Abstract Click HERE (MTD‐MP‐025 (377))