Improving Prognosis Communication for Patients facing Complex Medical Treatment: A User-Centered Design Approach

Abstract Background The understanding and processing of numerical prognostic information can be challenged for patients who suffer from disease and the stress of a diagnosis. Objective This paper investigates how patients respond to different graph representations of projected personal outcome data to patients diagnosed with Leukemia. Methods We conducted a user-centered design process, for which three experimental prototypes (vertical, horizontal, and pie charts) with and without animation were developed and evaluated using a think-aloud interview protocol while participants (n = 12), all but one who had all received allogenic hematopoietic stem cell transplants, interacted with the high fidelity prototypes. Results The results showed a preference for vertical bar charts over horizontal and pie charts while animating the charts to “fill-up” generally conveyed a subtle sense of positivity even when survival projection was low. The value of explicitly indicating numeric values and scale varied but the results suggest that what matters to participants is having control over when such details would be seen. The results also point out that making sense of prognostic information involves balancing the tension between information utility and patient fear and judgments about authenticity and credibility of survivability calculations. Conclusion Our findings are important for the design and implementation of representations of prognostic information. They suggest that an appropriate visual format can reduce potential negative effects in conveying survival information, as well as helping patients stay positive and motivated for cure in the delivery of information.