Patient preferences for visualization of longitudinal patient-reported outcomes data

Abstract

Objective: The study sought to design symptom reports of longitudinal patient-reported outcomes data that are understandable and meaningful to end users.

Materials and methods: We completed a 2-phase iterative design and evaluation process. In phase I, we developed symptom reports and refined them according to expert input. End users then completed a survey containing demographics, a measure of health literacy, and items to assess visualization preferences and comprehension of reports. We then collected participants' perspectives on reports through semistructured interviews and modified them accordingly. In phase II, refined reports were evaluated in a survey that included demographics, validated measures of health and graph literacy, and items to assess preferences and comprehension of reports. Surveys were administered using a think-aloud protocol.

Results: Fifty-five English- and Spanish-speaking end users, 89.1% of whom had limited health literacy, participated. In phase I, experts recommended improvements and 20 end users evaluated reports. From the feedback received, we added emojis, changed date and font formats, and simplified the y-axis scale of reports. In phase II, 35 end users evaluated refined designs, of whom 94.3% preferred reports with emojis, the favorite being a bar graph combined with emojis, which also promoted comprehension. In both phases, participants literally interpreted reports and provided suggestions for future visualizations.

Conclusions: A bar graph combined with emojis was participants' preferred format and the one that promoted comprehension. Target end users must be included in visualization design to identify literal interpretations of images and ensure final products are meaningful.

Keywords: Information visualization; graph literacy; health literacy; mobile health; nursing informatics.

Figure 1.

Example screen from video information provider human immunodeficiency virus–associated non–acquired immunodeficiency syndrome (VIP-HANA) app asking if an end user has experienced a specific symptom.

Figure 2.

Summary of 2-phase method to design and evaluate symptom reports.

Figure 3.

Symptom report formats assessed in phase I (Reports 1a-f) and a selection of participants' comments corresponding to each format.

Figure 3.

Symptom report formats assessed in phase I (Reports 1a-f) and a selection of participants' comments corresponding to each format.

Figure 3.

Symptom report formats assessed in phase I (Reports 1a-f) and a selection of participants' comments corresponding to each format.

Figure 4.

Symptom reports assessed in phase II (reports 2a-i), their associated comprehension question results, and a selection of participants' comments on each. An asterisk indicates that the response was translated into English for this article.

Figure 4.

Symptom reports assessed in phase II (reports 2a-i), their associated comprehension question results, and a selection of participants' comments on each. An asterisk indicates that the response was translated into English for this article.

Figure 4.

Symptom reports assessed in phase II (reports 2a-i), their associated comprehension question results, and a selection of participants' comments on each. An asterisk indicates that the response was translated into English for this article.

Figure 4.

Symptom reports assessed in phase II (reports 2a-i), their associated comprehension question results, and a selection of participants' comments on each. An asterisk indicates that the response was translated into English for this article.

Figure 4.

Symptom reports assessed in phase II (reports 2a-i), their associated comprehension question results, and a selection of participants' comments on each. An asterisk indicates that the response was translated into English for this article.

Figure 4.

Symptom reports assessed in phase II (reports 2a-i), their associated comprehension question results, and a selection of participants' comments on each. An asterisk indicates that the response was translated into English for this article.

Figure 4.

Symptom reports assessed in phase II (reports 2a-i), their associated comprehension question results, and a selection of participants' comments on each. An asterisk indicates that the response was translated into English for this article.