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))

Published
Categorized as Abstracts

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))

Published
Categorized as Abstracts