Presentation (CTI)

OBJECTIVES: The field of patient-reported outcomes (PRO) has been active for several decades, compared to the field of patient preferences (PP), which is relatively new. Research in PROs invests heavily to ensure they are valid, reliable, and fit for purpose. In some instances, PROS is the only way to assess a patient's experience with symptoms. PP could leverage PROs to include attributes that reflect patients' experience with the disease or their quality of life. This project explores usual practices in PP research to incorporate and define treatment attributes that could benefit from validated PROs, such as the symptom “fatigue.”
METHODS: Leveraging a large-scale review focusing on PP studies in medical products, we selected manuscripts reporting the use of “fatigue” to explore further how researchers have defined the term and whether any PRO has been used as reference.
RESULTS: From n=777 studies selected for the larger review, a total of n=90 studies have been chosen for this project, including a range of diseases but predominantly within oncology (59%). A wide range of different terms defining “fatigue” have been identified (e.g., tiredness, drowsiness, low energy). The definition of most of these attributes (>90%) resulted from an evidence review and qualitative findings. Overall, most of the PP exercises describe “fatigue” as a health status with levels (if applicable) describing frequency or severity, or sometimes both combined, but just a few refer to a PRO for the final description or definition of levels.
CONCLUSIONS: This work is ongoing. The research team still needs to consolidate the detailed extraction of relevant data from all 90 studies. We aim to provide an overview of the results that could elicit the discussion on whether it is worthwhile to explore further a more standardised integration of existing valid PROs to ensure disease symptoms, such as fatigue, are properly expressed and measured.