Since April 2021, the 21st Century Cures Act has required that health care providers and hospitals release imaging reports to patients immediately. This is intended to provide patients with timely results that improve patient engagement and shared decision-making. But the complexity of radiology reports can be difficult for patients to understand, thus causing anxiety and confusion that leads to more questions and need for clarification during clinic visits. Oncology nurses frequently field these questions, responding to patient and caregiver concerns about their radiology reports and helping them interpret the findings.
A team of researchers led by Jana Wieland, a medical student, and Kelly Quinn, MD at the University of Hawaii’s School of Medicine led a randomized clinical trial to explore patient and family caregivers’ confidence and accuracy in interpreting radiology reports. Their results, recently published in the Journal of Cancer Education, demonstrate that while patients desire access to their reports, most feel unprepared to read them.
A diverse group of patients (n = 69) and caregivers (n = 16) enrolled in the study at a community cancer center and were randomly selected to receive either a standard radiology report (an actual report that was de-identified) or a different version of the radiology report that was translated into layman’s terms (5th grade reading level and reviewed by clinicians for accuracy and consistency).
Most participants (68%) wanted access to radiology reports in their online patient portal. But a minority (21%) felt confident in reading and interpreting what the reports said. While 82% said the quickness of receiving results was important, 73% preferred waiting for a visit to the clinic with their oncologist, even if it required waiting. About half (53%) of participants felt anxious waiting for imaging results, and most (64%) agreed that electronic access to scans would relieve their anxiety during this waiting period.
Participants who read the layman’s report were 8 times more likely to find the report easy to read compared to participants who read the standard radiology report (82% versus 33%, respectively). The participants reading the layman’s report were also more likely to understand the medical terminology (38% versus 12%) and be able to recognize that the report showed tumor progression (88% versus 62%). Individual characteristics (age, income, education, internet usage) did not impact these findings.
Overall, this study confirms what many oncology nurses experience firsthand: patient and caregiver access to reports supports patients and caregivers’ desire for increased access to their medical information, but receiving reports full of medical terminology and jargon has questionable utility and value. While quick access may temporarily reduce patient and caregiver anxiety, it may inadvertently increase anxiety as patients try to decipher the meaning of their imaging results on their own.
Based on these study results, the researchers suggest that radiology reports include more layman interpretations of their findings. While this may be time consuming for radiologists to complete, new technologies like the PORTER (Patient-Oriented Radiology Reporter) can be integrated into the medical record to augment reports with layman definitions and links to Wikipedia entries. A similar practice has been adopted for mammography reports, setting a precedence that radiologists could adopt.
Oncology nurses are confronted with patient and caregiver anxiety about scans (frequently called “scan-xiety”) as they await information about cancer progression and treatment effectiveness. Though policy approaches to improving patient access to medical information are rooted in worthy motivations, the implementation outpaced the ability of healthcare providers and systems to provide understandable, helpful information. Oncology nurses should consider technology-based and patient-centered approaches to ensuring imaging reports can be accessed and interpreted by patients and caregivers in a timely, supportive way.
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