Addressing Health Literacy in Patient Decision Aids: An Update from the International Patient Decision Aid Standards

Abstract

Background There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development. Purpose An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of people with low health literacy/socially-disadvantaged populations. Data Sources Reference lists of Cochrane reviews of randomized controlled trials (RCTs) of PtDAs (2014, 2017, and upcoming 2021 versions). Study Selection RCTs that assessed the impact of PtDAs on low health literacy or other socially-disadvantaged groups (i.e., ≥50% participants from socially-disadvantaged groups and/or subgroup analysis in socially-disadvantaged group/s). Data Extraction Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify grade reading level, understandability, and actionability. Data Synthesis Twenty-five of 213 RCTs met the inclusion criteria, illustrating that only 12% of studies addressed the needs of low health literacy or other socially-disadvantaged groups. Grade reading level was calculated in 8 of 25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at sixth-grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared with studies that did not (χ2 = 14.11, P = 0.0002, I2 = 92.9%). Limitations We were unable to access 13 of 24 PtDAs. Conclusions. Greater attention to health literacy and socially-disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support.