Kucher A, Clearfield E, Skinner M and PROBE Investigators. National Member Organization’s PROBE Data Dashboard Update – Adding A Pain Dashboard Page for Better Understanding of the Pain Impact in People with Hemophilia. (2024), POSTER ABSTRACT (PP-167). (2024), Issue Information. Haemophilia, 30: 1-2. https://doi.org/10.1111/hae.15016
Introduction
The Patient Reported Outcomes, Burdens and Experience (PROBE) study has been implemented in 105+ countries and translated into 50+ languages. How does the study benefit national member organizations (NMO)? The PROBE team has developed an interactive dashboard utilizing data from the pain elements of the PROBE questionnaire, a hemophilia-specific quality of life instrument. This dashboard can be provided upon request to participating NMOs for analysis and study of their country’s data with options to aggregate data, generate graphs, and utilize filters to support and specify data analyses.
Methods
The first development of the PROBE NMO Dashboard started in 2017. The dashboard was developed using Power BI, Microsoft software. Since then, the dashboard has been modified to provide better data picture for NMOs to report to health policy decision makers or for use to test and analyze hypotheses for publications. The PROBE questionnaire asks about the use of pain medication, the presence of acute and chronic pain, when pain occurs, and whether pain causes interference in a person’s life for things such as activity, mood, relationship with others.
Results
The importance of detailed PROBE responses regarding pain has been discussed among the PROBE Investigator team and approved for modification. The newest upgrade to the dashboard is a specific Pain page that covers detailed data about acute and chronic pain interference and occurrences, activities of daily living, the EQ-5D-5L pain dimension, PROBE anxiety and depression items, PROBE score and EQ-5D-5L score.
Conclusions
The pain dashboard demonstrates that a person’s experiences with pain are highly important for reporting on quality of life for people with hemophilia. Having the ability to compare both a control group and hemophilia group with pain occurrences and interferences can support claims of better or worse quality of life that could be addressed through healthcare management or and improved access to treatment. Analyzing PROBE and EQ-5D-5L together demonstrates the importance of using both generic and disease specific quality of life instruments. The pain dashboard will be a valuable asset for NMOs for pain reports and management for people with hemophilia.
View Poster: Pain Dashboard Page
