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.
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