Explaining prediction models to trauma patients: An experiment and interview study

Objectives: Recently, efforts have been made to collect and model data on quality of life after an injury. Although such prediction models could be used for clinical guidance, patients might also benefit from knowing how their life will be affected after an injury. We therefore conducted two studies to (1) gain more insight into the effect different information types have on understanding personalized predictions and (2) explore how patients feel about receiving such predictions.

Methods: In the first study (N=983, normal population), we manipulated comparative risk information (e.g., performing better or worse than the average patient) and communication format (e.g., textual only or text and visual information). We tested if this affected (1) risk understanding, (2) risk perceptions and (3) negative feelings. Our pre-registered hypotheses were that people who received worse-than-average-risks would have higher risk perceptions (H1a) and more negative feelings (H1b) than people who received better-than-average-risks. Additionally, we hypothesized that people receiving the information in text and visuals would have higher risk perceptions (H2a), risk understanding (H2b) and more negative feelings (H2c) than people in the text-only condition. In the second study, we conducted interviews (N=30 trauma patients). Relevant themes were identified using thematic analysis.

Results: For study 1, we did not find support for our hypotheses. We found that in general, understanding risks was problematic. However, patients do have a need for personalized predictions. For study 2, we found that patients valued personalized predictions, although they are sometimes hard to understand. Receiving such predictions would help with planning for life after an injury better.

Conclusions: We conclude that although understanding personalized predictions might be difficult, patients do have a need for them and receiving such predictions does not lead to overly worrying as the information would help with planning for life after an injury better.