Abstract
Introduction Maintaining good quality of life (QOL) is a key consideration for pts with CML, yet there remains a lack of clarity and dialog around its impact on daily functioning. These issues are often underreported in clinical settings, contributing to a communication gap between pts and healthcare providers (HCPs). This gap highlights the need for tools that help pts routinely assess and share QOL concerns. To address this unmet need, we developed a digital CML Quality of Life Tracker that guides patients through up to 3 steps (rating the impacts on daily life, identifying symptom-affected areas, and selecting relevant symptoms from a list) culminating in a summary report to support conversations around QOL challenges, as previously described by Žáčková, et al. Here we report initial insights from prototype testing with pt advocates, HCPs, and consultants involved in the tool's development.
Methods The CML Quality of Life Tracker was developed with input from HCPs and pts across multiple countries to ensure relevance and usability. Prototype testing was conducted with 3 distinct groups: pt advocates (n=7), HCPs (n=9), and a group of consultants (n=7) composed of 4 HCPs and 3 pt advocates. Each group reviewed the tool and participated in dedicated feedback sessions in which they completed surveys tailored to their respective roles as pts or HCPs, shared impressions, identified strengths and limitations, and provided recommendations. Quantitative input was collected via surveys from pt advocates (n=5), HCPs (n=5), and consultants (n=5); additional qualitative insights came from participants who did not complete the full survey (pt advocates, n=2; HCPs, n=4; HCP consultants, n=2). Insights from these sessions were collected and synthesized to inform future updates to the tool.
Results Pt advocates and pt advocate consultants rated step 1 (impact on daily life) as easy (4/8 [50%]) or very easy (4/8 [50%]), step 2 (impact on body) as neither easy nor difficult (1/8 [12.5%]), easy (5/8 [62.5%]), or very easy (2/8 [25%]), and step 3 (associated symptoms) as easy (3/8 [37.5%]) or very easy (5/8 [62.5%]). They agreed on the high relevance of these 3 core steps and rated their likelihood of recommending the tracker as high or very high (7/8 [87.5%]), with only 1 respondent (12.5%) selecting a neutral score. Of HCPs, 100% agreed that the tracker is useful and pt-centric, and all indicated plans to use it regularly.
Pt advocates outside of the consulting group found the tracker's 2 summary reports somewhat challenging to understand, rating the results of the questionnaire as difficult or neutral (2/5 [40%]), and the consolidated view of patient data over time as difficult or neutral (3/5 [60%]). In contrast, nearly all HCPs and consultants found them easy or very easy to read and understand.
Recommendations shared across groups included prioritizing symptoms, saving progress, customizing reporting pathways, and generating summaries tailored for care teams. Improving navigation and visual design was a consistent theme among pt advocates and consultants, while both HCPs and consultants emphasized the need to track multiple symptoms simultaneously. Of pt advocates in the consultant group, 100% said it would be useful to see comparative data points on users that experience the same symptoms as them.
While HCPs emphasized integration into clinical workflows and cross-device accessibility, pt advocates prioritized education materials and self-evaluation tools, and consultants stressed inclusivity features such as multilingual support and audio options.
Conclusions Prototype testing of the digital CML Quality of Life Tracker revealed pt advocates' optimism about its relevance and utility, and HCPs' interest in its potential for clinical implementation. While viewed as a valuable tool for facilitating communication around QOL, feedback highlighted key areas for enhancement, including simplifying navigation, expanding symptom tracking, integrating comparative/historical data, and improving report customization. Group-specific insights emphasized inclusivity, educational resources, and technical refinements. These findings will guide further development to better support discussions about QOL. The tracker is expected to launch globally in September 2025, following final alignment with the consulting group. Future updates will incorporate real-world usage data and user feedback to enhance the tool over time.
