Surveys examine patient, dermatopathologist views on understanding of reports
Dermatopathology reports may need to be redesigned to increase patient comprehension due to the lack of understanding patients have of current reports, according to a research letter published in JAMA Dermatology.
An anonymous survey was offered to all patients at Brigham and Women’s Hospital dermatology clinic over 6 days in April 2019. The survey asked about demographics and attitudes about technology, with a request to interpret a deidentified pathology report. However, a separate survey suggested that most practitioners would not change the content of dermatopathology reports and that a “substantial proportion” of practitioners already receive phone calls from patients who read their reports and want to discuss the results.
“This study showed that sharing of health data, such as dermatopathology results, with patients may not be achieving the goal of transparency, as even a highly educated patient population struggled to correctly identify the diagnosis or its implications when asked to interpret a standard report,” Alice Watson, MD, MPH, of the department of dermatology at Brigham and Women’s Hospital at Harvard Medical School in Boston, told Healio.
Two hundred twenty-five patients completed the survey; 84% had higher education, and 70% used a patient portal on at least a monthly basis. Overall, participants rated themselves as confident in their technology and health literacy.
In the survey, 27 patients (12%) selected the correct diagnosis, 79 (35.1%) selected the incorrect diagnosis, and 92 (47.6%) did not select any diagnosis; 125 of 203 patients (61.6%) felt the report was somewhat or very easy to understand despite the low number of correct diagnoses. After reading the report, 170 of 184 patients (92.4%) were somewhat or very worried, even though the diagnosis was benign, and 14 of 184 (7.6%) felt somewhat or very reassured by the result, including false reassurance for four participants who had an incorrect interpretation of the report.
The ability to judge whether the report was easy or difficult to comprehend was not associated with the ability to identify the correct diagnosis in the report.
“There has been a lot of momentum around the concept of sharing health information, such as notes and results, directly with patients,” Watson said. “While we support the concept of transparency, we believe there is still further work required to better understand how to make the data we share be of maximum value to patients. Misunderstandings around test results can lead to unnecessary anxiety (or false reassurance) for patients.”
A separate survey study included 160 dermatopathologists (67% male, mean age 49 years) in 34 states. Each participant was given a survey of six questions related to participants’ experiences with patient access to online pathologic test results.
“Patient access to online pathologic test result reports may facilitate a more active role for patients in their medical care; however, reports are often written at a reading level above most patients’ abilities,” Hannah Shucard, MS, of the department of biostatistics at the University of Washington in Seattle, and colleagues wrote. “Pathologic test reports are challenging even for clinical practitioners to understand.”
One hundred forty-nine practitioners (93%) were aware that some patients have online access to their reports, and 91 (57%) reported that patients have directly contacted them about discussing pathologic test result reports.
Fifty-seven participants (36%) said they might change the way reports are written by decreasing abbreviation use and specialized terminology, and 29 (18%) said they might change reports by changing the way lesions suspicious for cancer are described. Ninety-seven respondents (61%) reported being open to receiving calls from patients concerning reports, while 39 (24%) said they would need specialized training to communicate with patients.
The overall survey assessment of practitioners showed that perception of patient online access to pathologic reports was positive, despite concerns about patient confusion and worry.
“As patient access to pathologic test result reports increases, it is important to consider best practices to minimize potential negative consequences for patients and clinicians,” Shucard and colleagues wrote. “To mitigate patient confusion, one possible solution would be use of a standardized classification tool, such as MPATH-Dx, when reporting on challenging melanocytic lesions.”
Increased access to data
“Patients rightly expect increased access, control and understanding of their health data, and information will continue to flow more freely,” Daniel Miller, MD, of the department of dermatology at the University of Minnesota, wrote in an accompanying editorial. “However, direct patient access to dermatopathologic and other pathologic reports carries unique risks that must be carefully managed, including a high potential for patient confusion and miscommunication on sensitive topics.”
Miller said that it is important for dermatology clinicians to recognize their online partnership with patients in sharing data and reports and recognize and minimize the potential negative consequences. To understand the implications of increased transparency in patient health information, Miller suggested further study. – by Erin T. Welsh
Disclosures: Miller reports no relevant financial disclosures. Shucard and colleagues report no relevant financial disclosures. Please see the Yanovsky report for all relevant financial disclosures.