Developing patient-friendly genetic and genomic test reports: formats to promote patient engagement and understanding

Abstract

With the emergence of electronic medical records and patient portals, patients are increasingly able to access their health records, including laboratory reports. However, laboratory reports are usually written for clinicians rather than patients, who may not understand much of the information in the report. While several professional guidelines define the content of test reports, there are no guidelines to inform the development of a patient-friendly laboratory report. In this Opinion, we consider patient barriers to comprehension of lab results and suggest several options to reformat the lab report to promote understanding of test results and their significance to patient care, and to reduce patient anxiety and confusion. In particular, patients' health literacy, genetic literacy, e-health literacy and risk perception may influence their overall understanding of lab results and affect patient care. We propose four options to reformat lab reports: 1) inclusion of an interpretive summary section, 2) a summary letter to accompany the lab report, 3) development of a patient user guide to be provided with the report, and 4) a completely revised patient-friendly report. The complexity of genetic and genomic test reports poses a major challenge to patient understanding that warrants the development of a report more appropriate for patients.

Figure 1

Mock-up reports of the four proposed options for the pharmacogenetic mutation analysis test of the KRAS gene to inform treatment decisions for colorectal cancer patients [ 111 - 113 ] . (a) Option 1: test report with interpretative summary box written in patient-friendly language describing the test, test result, and interpretation. (b) Option 2: summary letter with more extensive description of the test and test result in patient-friendly language. (c) Option 3: patient user guide to accompany the test report to help patients navigate and understand sections of the test report. (d) Option 4: first page of a completely patient-friendly lab test report written in patient-friendly language. Please note that these sample reports are not actual clinical reports. Note, for option 2, that the Flesch-Kincaid Reading Ease [114] score is 51 (on a scale from 1 to 100), corresponding to a 9th grade reading level. For option 4, the Flesch-Kincaid Reading Ease score is 56 (on a scale from 1 to 100), corresponding to a 9th grade reading level. However, if the names of the drugs are removed, it decreases to a 7th to 8th grade reading level.