Purpose: To determine the relationship between patient literacy level and anxiety, knowledge, preference for shared decision making, perceived patient-physician communication, and treatment choice.
Method: 1015 men undergoing a prostate biopsy were recruited from 4 VA hospitals either before or after receiving their biopsy, as a part of a study examining prostate cancer decision aids. Participants completed measures at 3 timepoints: biopsy (Time 1), immediately before receiving their cancer diagnosis (Time 2), and one week post-diagnosis (Time 3). Only patients with positive biopsy results indicating localized cancer were eligible to complete Time 2 and 3 measures (N=335). Literacy was measured using the Rapid Estimates of Adult Literacy in Medicine (REALM).
Result: 72.6% of participants were classified as having adequate literacy (≥9th grade reading level), while 27.4% were classified as having inadequate literacy (≤8th grade reading level). Participants with inadequate literacy had higher levels of anxiety at each timepoint (p’s<0.01) and had marginally lower knowledge at Time 2 (57% correct vs. 62% correct; p=0.09). Participants with inadequate literacy were less interested in shared decision making at Time 1 (2.25 vs. 2.38; p<0.01), but this difference disappeared after they received a decision aid (Times 2 and 3), with their interest in shared decision making increasing over time (M’s = 2.25, 2.42, 2.50). Before meeting with their urologist, participants with inadequate literacy were less interested in active surveillance (23.8% versus 41.8%; p<0.02) and more interested in surgery (55.6% versus 37.5%; p<0.04), compared to those with adequate literacy. There were no differences between groups in treatment preferences after patients had spoken with their urologists (Time 3), nor in the treatment they ultimately received (determined via medical records). Participants’ perception of the quality of patient-physician communication did not differ by literacy level.
Conclusion: These results demonstrate that patient literacy is related to patients’ decision making experiences. Patients with inadequate literacy exhibited higher anxiety, were initially less interested in shared decision making, and were more likely to prefer more invasive treatment. These results suggest that patients with varying literacy levels may experience the decision making process differently. These results highlight the need for decision aids that are written with lower literacy readers in mind and suggest that lower literacy patients may need additional services to help them during the decision making process.