Patient Preferences For Plain Language Summaries [Survey]

New study reveals patient preferences for medical research articles’ readability level and format

Health information should be easy to access, use, and understand for everyone, including both patients and their caregivers. However, despite the increasing availability of medical content from different forms of media, studies have shown that few non-experts can understand, or act on, the health information available

Often, the text is written so that it is beyond the general reading level, limiting understanding and hindering decision-making.

Enter the plain-language summary.

Plain language summaries (PLSs) have been introduced to give readers a clear, nontechnical, and easily understandable overview of medical, scientific, and policy literature.

Text is written using short, clear sentences, using everyday English words, and avoiding complex grammatical structures. Consequently, a PLS can explain complicated medical research to nonexperts, thereby extending scientific information’s reach and empowering non-experts to act on the information they receive.

Further, scientists directly disseminate their findings to a wider audience outside of the scientific community, ensuring greater clarity and reducing the possibility of misinterpretation by the media or social media.

Even though the rationale for providing patients with plain language summaries is well understood, little is known about specific patient preferences for PLSs.

Survey Methodology

In this study, three chronic diseases were selected to represent three different age groups based on the older and younger populations that were affected by each: psoriasis for younger patients, multiple sclerosis for middle-aged patients, and rheumatoid arthritis for older patients.

Figure 2. Demographics of survey respondents across different chronic disease states. Silvagnoli et al.

Based on their impact factor, journals were chosen based on their publication of research articles on all three diseases. A PubMed search for randomized controlled phase III trials published between May 2016 and May 2018 was conducted to identify specific articles.

For each article, the authors developed four PLSs: three text-only summaries written with high-, medium-, or low-complexity wording, and one infographic. Using an online survey, organisations representing patients and caregivers from each of the three disease states were asked to rate the readability and presentation of the PLSs. A total of 167 patients and caregivers completed the survey, of whom approximately 90% were women and over half had a university degree.

Survey Results

Across all three disease states, the infographic was the first-choice PLS format for most respondents. The most preferred text-based format was medium-complexity (reading age 14–17 years, US Grade 9–11).

Figure 3. Respondents’ first-choice preference of PLS format for the different disease states. PLS: plain language summary. Figure 3.

The main reasons for preferring these formats were that the information presented was clear, concise, easy to understand, and included relevant detail without oversimplification.

The participants’ preference for both the infographic and medium-complexity text-based PLS formats was based on information clarity and conciseness without sacrificing key details.

The high-complexity text-based PLS was thought to use excessive jargon, necessitating a scientific background to fully appreciate the information. Participants, on the other hand, were dissatisfied with the low-complexity PLS format, deeming it too simple and lacking in substance.

Conclusion

When creating a PLS to supplement an original peer-reviewed research article, it is important to consider the preferences of the audience.

Oversimplification of text can be perceived negatively, and infographic versions or medium-complexity text appear to be the most popular.

More research would be beneficial to broaden the scope of the therapy areas covered as well as the profile of those surveyed to include other nonexpert populations and healthcare professionals from other fields of study.

It would also be of interest to evaluate the understanding of the information presented in a PLS rather than focus on the preferred format alone.

*Martínez Silvagnoli L, Shepherd C, Pritchett J, Gardner J
Optimizing Readability and Format of Plain Language Summaries for Medical Research Articles: Cross-sectional Survey Study
J Med Internet Res 2022;24(1):e22122
DOI: 10.2196/22122