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.
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