SPONSORED RESEARCH: Developing and Piloting an Epic-Integrated PRO-Based Adverse Event Monitoring and Decisional Support Tool for TKI Therapy in CML
September 16, 2026
Read a Q&A Below:
Kimberly Webster, MA and team at Northwestern University's Feinberg School of Medicine Department of Medical Social Sciences recently received a grant titled, “Developing and Piloting an Epic-Integrated PRO-Based Adverse Event Monitoring and Decisional Support Tool for TKI Therapy in CML,” from the National Comprehensive Cancer Network.
What are the aims of the project?
Advances in targeted therapy have transformed chronic myeloid leukemia (CML) into a condition that can often be managed long term, but this typically requires ongoing daily treatment with tyrosine kinase inhibitors (TKIs). Treatment-related side effects can affect functioning and quality of life, and the cumulative burden of living with these effects over time can influence how tolerable treatment feels to patients, with implications for treatment adherence and persistence. Patients may not always communicate these concerns to their clinicians, underscoring the importance of systematically monitoring symptoms and treatment experiences as part of routine care. At the same time, several effective TKIs are available that differ in their side-effect profiles, risks, and other treatment characteristics. Because there may be more than one clinically appropriate option, treatment decisions can be preference-sensitive, making patients’ personal goals and preferences important to ongoing treatment decisions. Together, these factors create an important need for efficient ways to monitor symptoms and treatment burden over time and use this information to support both symptom management and shared decision-making.
The goal of this project is to develop and pilot PRO-ACT (Patient-Reported Outcomes for Adverse Event Monitoring and Clinical Treatment Decision-Making), a brief, patient-centered, Epic-integrated approach to symptom monitoring and shared decision-making for patients with CML receiving TKIs. PRO-ACT will be designed to capture the symptoms, functional and quality-of-life impacts, and treatment considerations that are most important to patients, with an emphasis on information that is clinically meaningful or actionable. This information will be presented in a brief, easy-to-review summary on the clinician dashboard to highlight areas where patients may be experiencing difficulties, support symptom management when needed, and facilitate treatment discussions when appropriate. The pilot will evaluate the feasibility, usability, acceptability, and clinical utility of this approach.
What are your next steps?
The project will begin with a targeted literature review and input from patients and clinicians with experience with CML and TKI therapy. These findings will inform the content of the PRO-ACT assessment and how it should be incorporated into clinical workflow, including assessment timing and clinically meaningful alert thresholds. We will then work with Northwestern Medicine Information Services to integrate and test PRO-ACT within Epic before conducting a six-month feasibility pilot with 20 patients who are initiating or switching TKI therapy.
What do you hope will come out of this funded research?
We hope to develop a brief, practical approach that makes it easier to systematically capture patients’ experiences with TKI-related side effects alongside their current treatment preferences and goals, and bring that information directly into routine clinical care. Ultimately, the goal is to support earlier recognition and management of treatment-related symptoms and facilitate shared decision-making when treatment choices are preference-sensitive. This has the potential to improve patient-clinician communication and help patients remain on or switch to an effective and acceptable therapy when appropriate. If successful, this pilot could help establish the foundation for a scalable, technology-enabled approach with potential for expansion across CML care and adaptation to other cancers and clinical settings where long-term therapy requires ongoing monitoring of treatment-related adverse events and where treatment decisions are preference-sensitive.