JMIR Publications

ABSTRACT

The 21st Century Cures Act Information Blocking Rule that went into effect in 2021 requires that health systems not interfere with delivering test results to patients, including laboratory, pathology, and imaging results. Consequently, many health systems release results immediately, and patients often view results before the ordering clinician has seen them. Patients overwhelmingly want this access. In a 2023 multisite survey, 95.7% (7,520 of 7,859) preferred immediate release. Yet the same survey found that 16.5% (403 of 2,442) receiving abnormal results reported increased worry from reading them before clinician contact. In this Viewpoint, written with a patient co-author living with a grade 2 astrocytoma, we argue that there are two distinct forms of anxiety. The distress of serious medical news is unavoidable. The anxiety of not knowing what a phrase means, or when someone will contact them, can be reduced. We propose that clinicians address the second at the moment of test ordering rather than when the result arrives. We identify three sources of distress when a result appears in a portal: threat, uncertainty, and loss of control. We use a real radiology result, "suspicious for tumor progression," and the patient co-author's experience of the distress patients call “scanxiety,” to illustrate these themes in an anticipatory guidance conversation. Borrowing the framework of anticipatory guidance from pediatric practice, we offer a five-step conversation guide for clinicians at the time of test ordering. 1. Inform the patient they are likely to see the result before the clinician can contact them; 2. The patient has a choice whether to look immediately; 3. There are trusted resources for the patient to read about the result; 4. Describe to the patient the best and worst case scenarios and how they would be contacted in each case; 5. Solicit questions. We pair this with recommendations for health systems and electronic health record vendors, principally that portals distinguish "you have a new test result" from "you have a message from your team," and that notification settings be easy to silence. We believe immediate patient access to test results is the right direction. We propose that anticipatory guidance is an important framework to reduce a major component of test-related anxiety, and that it should be widely adopted by clinicians.