Y. S. Fisher1, A. Gillis1, P. Zmijewski1, C. Mcleod1, J. Fazendin1, H. Chen1, B. Lindeman1 1University Of Alabama at Birmingham, Surgery, Birmingham, Alabama, USA
Introduction: As our growing population demonstrates a significant increase in the incidence of thyroid cancer, so does patient access to their medical records. Poor health literacy and understanding of disease severity, underscores the importance of effective and accessible patient-doctor communication. No previous studies on patient understanding of thyroid pathology reports exist, we sought to characterize health literacy in this population
Methods: Using a modified Delphi technique, local expert thyroid pathologists, thyroid endocrinologists, and endocrine surgeons were queried for terms they believed patients should understand from a pathology report (i.e., malignancy, indeterminate, and lymph node involvement, etc.). A 12-question patient survey with possible definitions for each term was then synthesized and administered to patients with thyroid pathology following IRB approval at a single quaternary care institution. Survey results, patient demographics, history of prior thyroid procedure (biopsy or surgery), and self-reported health literacy were collected. Data analysis included t tests, chi-squared, and multivariable linear regression using R.
Results: The survey was completed by 54 patients (response rate: 69.8%). A majority of respondents were female (82.0%) and White (66.7%), with a median age of 53 years (range 15-90 years). Seventy percent of respondents had a recent or remote previous thyroid procedure (biopsy or surgery). Twenty-nine percent had less than a high school education. Most respondents (87.0%) self-reported high health literacy. The average number of correct answers on the thyroid pathology survey was 7 out of 12 (57.8%), with three respondents scoring 100%. "Indeterminate” was defined correctly least often, with only 27.9% of respondents choosing the correct answer, while “malignancy” was defined correctly most often (79.1% of respondents). In multivariable linear regression, White respondents scored 2.48 (95%CI: 1.01, 3.96; p=0.001) points higher on average on the survey than non-Whites. Additionally, those with high school level education or less scored 3.98 (-5.64, -2.32; p<0.001) points lower on average than respondents with greater than a high school education. There were no significant associations in survey scores with other demographic characteristics such as age, health literacy level, and previous thyroid procedure
Conclusion: Overall, terms on a thyroid pathology report are poorly understood by patients. This is exacerbated by non-white race and low educational attainment. More work must be done and resources developed to make thyroid pathology reports easier to understand especially for our most vulnerable populations.
