Systematic quality assessment of patient education materials and decision aids for breathlessness

Abstract

Background: About 10% of individuals suffer from breathlessness. Patient education materials (PEMs) are important for shared decision making.

Aims: This systematic review and environmental scan aims to assess the readability, quality and actionability of PEMs for breathlessness.

Methods: PEMs published between 1 January 2010 to November 2020 were systematically obtained from CENTRAL, Embase Ovid, Pubmed, Google and 15 known decision aid repositories. Two reviewers independently assessed PEMs against the inclusion criteria, extracted data and performed quality assessment. Readability was assessed by a composite of 7 indices, understandability and actionability through the PEM Evaluation Tool (PEMAT-P), and quality against the International Patient Decision Aid Standards (IPDAS) criterias and the DISCERN tool.

Results: A total of 4236 PEMs were screened and 88 PEMs analysed. The majority (51%) were for breathlessness in general, hyperventilation (22%) and 27% other diseases. Readability indices showed an average minimum reading level of Grade 10 with 35 PEMs being suitable for the general population (Grade 8) and only 1 suitable for those with low health literacy (Grade 5). PEMs scored an average of 87% for understandability and 67% for actionability. Only 5 PEMs fit the IPDAS criteria as a decision aid. Based on the DISCERN tool, 10 were classified as high quality, 55 moderate quality and 23 low quality.

Conclusions: Few PEMs provided sufficient support for decision making, are of high quality and suitable for low health literacy populations. There's a need for higher quality PEMs that promote equity of access particularly to those with low literacy who are most vulnerable to breathlessness.