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Plain language summaries (PLSs) are intended to provide readers with a clear, nontechnical, and easily understandable overview of medical and scientific literature; however, audience preferences for specific PLS formats have yet to be fully explored.
This study aims to evaluate the preferred readability level and format for PLSs of medical research articles of different disease states via a web-based survey of audiences of different age groups.
Articles describing phase III clinical trials published in top-level, peer-reviewed journals between May 2016 and May 2018 were identified for 3 chronic disease states representing a range of adult patient age groups: (1) psoriasis, a skin disease representative of younger patients; (2) multiple sclerosis (MS), a neurological disease representative of middle-aged patients; and (3) rheumatoid arthritis (RA), a painful joint disease representative of older patients. Four PLSs were developed for each research article, of which 3 were text-only summaries (written with high, medium, and low complexity) and 1 was an infographic. To evaluate each of the 4 PLS formats, a 20-question open survey (specific to one of the 3 diseases) was sent to a representative sample selected via UK-based patient association websites, Twitter, and Facebook patient groups. A weighted-average calculation was applied to respondents’ ranked preferences for each PLS format.
For all 3 articles, the weighted-average preference scores showed that infographic (psoriasis 2.91, MS 2.71, and RA 2.78) and medium-complexity text-based PLS (reading age 14-17 years, US Grade 9-11; psoriasis 2.90; MS 2.47; RA 2.77) were the two most preferred PLS formats.
Audience preferences should be accounted for when preparing PLSs to accompany peer-reviewed original research articles. Oversimplified text can be viewed negatively, and graphical summaries or medium-complexity text-based summaries appear to be the most popular.
Patients and caregivers should have the chance to read about medical research in a format they can understand. However, we do not know much about the formats that people with different illnesses or ages prefer. Researchers wanted to find out more about this. They selected 3 medical articles about illnesses that affect different age groups: psoriasis (younger patients), multiple sclerosis (middle-aged patients), and rheumatoid arthritis (older patients). They created 4 summaries of each article. One was a graphical summary, and the other 3 were words-only summaries of high, medium, and low complexity. Then, the researchers posted surveys on UK patient group websites and Facebook patient groups to ask people what they thought of the summaries. The surveys were taken by 167 people. These people were patients with psoriasis, multiple sclerosis, or rheumatoid arthritis, or their caregivers. Most were women, and about half had a university degree. For each illness, most people preferred the graphical summary. Among the word-only summaries, most people preferred the medium-complexity wording written for a reading age of 14 to 17 years. People felt that the graphical and medium-complexity summaries were clear and concise, while the others used jargon or were too simple. Authors of medical articles should remember these results when writing summaries for patients. More research is needed about the preferences of other people, such as those with other illnesses. (See Multimedia Appendix 1 for the graphical summary of the plain language summary.)
Health literacy, that is, the degree to which individuals can obtain, process, and understand basic health information to make appropriate health decisions [
Plain language summaries (PLSs) have been introduced to make written and verbal information more easily understood by nonexperts [
Through the use of PLSs, scientific information is given a direct route from researchers to a broader audience beyond the scientific community. PLSs provide greater clarity to all those interested in learning about expert scientific material [
PLS is a term used to cover many forms of summary information in the medical or scientific setting. It is important to make the distinction between two of the most common forms of PLS, as explained below.
The first is a clinical trial summary (CTS), where clinical trial sponsors produce a brief summary of the trial, focusing on the main results (ie, the primary endpoint and key safety data). These summary documents are shared with trial participants and the general public; they are usually posted on the sponsor’s website or an independent electronic repository. CTS are a mandatory requirement of the European Union Clinical Trials Regulation and Good Lay Summary Practice (GLSP) recommendations have recently been published as part of the EudraLex Volume 10 clinical trials guidelines [
The second form of PLSs, which is the focus of our research, relates to summarizing a peer-reviewed article published in a medical journal [
The benefits of PLSs have been recognized [
Different text readability formulas are available to aid the development of PLSs [
This cross-sectional study aims to evaluate the preferred readability and format for PLSs of medical research pertaining to chronic diseases affecting different age ranges, among web-based, lay audiences (ie, patients and caregivers) who may likely have an interest in obtaining information about the latest research in the field.
Three chronic diseases were chosen, representing different age band classifications based on the age groups commonly affected by these conditions—psoriasis, representative of a predominantly younger population; multiple sclerosis (MS), representative of a predominantly middle age group; and rheumatoid arthritis (RA), representative of predominantly older patients. To source relevant articles, journals were selected based on their impact factor and narrowed down to those that published research articles focusing on all 3 diseases. Specific articles were identified using the PubMed database, searching for randomized controlled phase III trials published from May 2016 to May 2018.
One article was selected for each chronic disease [
Examples of various PLS formats used. (A) High-complexity text-only PLS, (B) medium-complexity text-only PLS, (C) low-complexity text-only PLS, and (D) infographic PLS format. Text complexity in each case was determined using an automated readability checker from Readabilityformulas website [
A 20-question (1 question per page), web-based open survey was developed using SurveyMonkey [
Ethical approval was obtained from the Manchester Metropolitan University Research Ethics Committee. All survey responses were anonymous, and no personal information or identifying information were collected or made available to the researchers.
Participants were informed of the scholarly purpose of the study, details of the principal investigator, estimated length of time for survey completion, and anonymity of data they were to provide. Cookies inherent to the SurveyMonkey platform were used, which prevented duplicate entries [
The completion rate was determined by calculating the ratio of total number of respondents who finished the survey to total number of respondents who initiated the survey. All data were included in the analysis, regardless of whether the survey was fully completed.
No formal statistical analyses were performed on these data. A weighted-average calculation, performed through the SurveyMonkey platform, determined the average ranking for each PLS option to identify the most preferred format. The format with the highest average ranking score indicates the respondents’ preferred option.
The average ranking was calculated as follows:
where
For each person who responded, the most preferred choice (ranked as #1) was assigned the largest weight (in this case: 4); by contrast, the least preferred choice (ranked #4) was assigned a weight of 1. No data adjustments were made.
Subgroup analyses were also performed to identify PLS preference based on individuals’ age (younger, 18-34 years; middle-aged, 35-54 years; or older, ≥55 years), gender (female, male, or other), and education level (nondegree level or university degree level, defined as including a UK university bachelor’s degree, master’s degree, PhD, or other postgraduate degree).
This article was prepared in accordance with the Checklist for Reporting Results of Internet E-Surveys (CHERRIES; see
In total, 167 survey responses were received for the 3 surveys (psoriasis, n=32; MS, n=32; RA, n=103;
Demographics of survey respondents across different chronic disease states.
Across all 3 disease states, the infographic was the first-choice PLS format for most respondents (psoriasis, 15/30, 50%; MS, 17/30, 57%; RA, 33/100, 33%), whereas the low-complexity text-only PLS was the least preferred first-choice format (psoriasis, 4/30, 13%; MS, 2/30, 6%; RA, 22/100, 22%; see
Respondents’ first-choice preference of PLS format for the different disease states. PLS: plain language summary.
Similarly, results from the weighted-average preference score data demonstrated that the infographic (psoriasis 2.91; MS 2.71; RA 2.78) and medium-complexity text-only PLSs (reading age 14-17 years, US Grade 9-11; psoriasis 2.90; MS 2.47; RA 2.77) were the 2 most popular PLS formats across all 3 diseases analyzed (
Weighted mean scores for preferred PLS format. PLS: plain language summary.
Among those who chose the infographic format as their first-choice preference, the majority for both the psoriasis and MS groups were in the younger age category of 18 to 34 years (psoriasis 10/15, 67% and MS 8/17, 47%). In contrast, for the RA group, the preference for the infographic format was similar among middle-aged (35-54 years; 16/33, 49%) and older respondents (≥55 years; 14/33, 42%; see
Of the respondents who preferred the medium-complexity text-only PLS format, the majority in each group were ≥55 years of age for MS (2/4, 50%) and RA (14/23, 61%); however, for psoriasis, the preference was equal across all 3 age groups analyzed (2/6, 33%; see
As part of the survey, respondents were able to provide free-text feedback regarding the different PLS formats (
Reasons (verbatim) provided by the survey respondents for specific preference for the infographic or medium-complexity text-only PLS formats are listed below:
…[infographic] helpful in getting statistical information across.
...[infographic] clear, concise, and easy to understand.
…graphic summary was accessible almost at a glance.
…[infographic] well detailed and a lot easier to read than loads of text.
[medium-complexity] summary combined straightforward language with enough information.
[medium-complexity] text was well detailed and in a language that was easy to understand by anyone.
[medium-complexity] would ‘fill-in-the-gaps’ and provide the detail that the [infographic] summary by its very nature could not.
Reasons (verbatim) provided by the survey respondents that suggest the high-complexity text-only and low-complexity text-only PLS formats were less popular are listed below:
The [high-complexity text] was way too hard to understand what they were saying, too many big words.
[High-complexity] summary was quite complex to understand.
[High-complexity] requires greater concentration and previous experience of medical terminology, e.g., AE – not all would know that this means adverse event.
I ranked the [low-complexity] text summary 4th because, although it was short and easy to read, it did not give me the pertinent statistical data from which the conclusion was drawn.
I thought the [low-complexity] text summary had been simplified to the extent that it lost some meaning.
I personally hate dumbed-down items… Difficult subjects should be explained…
Our findings showed a clear preference for an infographic PLS format among the 3 disease states we assessed (psoriasis, MS, and RA). Medium-complexity (reading age 14-17 years, US Grade 9-11) was the most preferred text-based format. The main reasons cited for preferring these formats were that the information presented was clear, concise, easy to understand, and included relevant detail, without oversimplification of the content. The majority of respondents were women, and approximately half had a university-level degree. Preferences remained the same regardless of education status; however, younger respondents were more likely to prefer the infographic to the text-based format.
PLSs are an important tool for improving health literacy. Research has indicated that most nonexperts express difficulty understanding medical and scientific texts, especially when reading text describing complex clinical research [
In recent years, there have been initiatives to improve the reach of information meant for a nonexpert audience. In 2010, the United States Congress recognized the need for the use of plain language when communicating information intended for the public [
Additionally, in 2017, to increase public access to healthcare information, the nonprofit organization eLife compiled a list of organizations that provide PLSs of published scientific research—including more than 50 medical or scientific journals [
To standardize PLS formats, readability scores and formulas (within applications like Microsoft Word or by using web-based tools [
The best way of presenting research results to different audiences remains unclear. Few studies have investigated this topic, which indicates that scientific findings can be difficult to interpret [
The overall sample may have been a more educated population than the general public, being sourced from patient groups and those who regularly use the internet and social media. We consider this more educated population to be representative of the technology-competent, information-seeking individuals most likely to be sourcing and reading PLSs; however, it does not necessarily capture the preferences of audiences who are less technologically aware and who may still benefit from exposure to clinical research through reading PLSs.
There was a notable gender imbalance within all 3 subpopulations surveyed, with approximately 90% of the respondents being women in each case. Women are more likely to experience RA and MS than men, whereas the prevalence is about equal for those with psoriasis [
Although the samples for each disease included in the survey provided enough data to generate meaningful results, the number of people who responded to the psoriasis and MS surveys were only a third of those who responded to the RA survey. Results of the subgroup analyses should be treated with caution due to the low number of respondents in each subgroup, particularly from the psoriasis and MS populations.
Since developing the PLS for each of the 3 source articles surveyed, our understanding and application of best practices in plain language writing for publications have advanced. If we were to repeat this project, we would apply more principles outlined in the tools to help guide plain language writing [
Furthermore, although we used a web-based tool to assess readability [
Audience preferences should be accounted for when preparing a PLS to supplement an original peer-reviewed research article. However, oversimplification of text can be viewed negatively, and infographic versions or medium-complexity text appear to be the most popular. Further research would be useful to expand both the scope of the therapy areas covered and 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. Training at professional societies such as the International Society for Medical Publication Professionals [
Plain language summary of this article in an infographic format.
High-, medium-, and low-complexity text-based plain language summaries for psoriasis.
High-, medium-, and low-complexity text-based plain language summaries for multiple sclerosis.
High-, medium-, and low-complexity text-based plain language summaries for rheumatoid arthritis.
Summary of readability scores and other features of text-based plain language summaries for all 3 sample articles evaluated. PLS: plain language summary.
Survey questionnaire for all 3 disease states evaluated.
UK-based patient associations and Facebook groups used to identify survey respondents.
Subgroup analyses. MS: multiple sclerosis; PLS: plain language summary; RA: rheumatoid arthritis.
Free-text feedback on reasons for the preferred PLS format. PLS: plain language summary.
Checklist for Reporting Results of Internet E-Surveys (CHERRIES).
Checklist for Reporting Results of Internet E-Surveys
clinical trial summary
General Certificate of Secondary Education
Good Lay Summary Practice
multiple sclerosis
plain language summary
rheumatoid arthritis
This research was sponsored by the Manchester Metropolitan University and was supported by CMC Connect, McCann Health Medical Communications. The authors thank all individuals who participated in the survey. Medical writing support, under the direction of the authors, was provided by Rachel Janes and Dominic Singson of CMC Connect, McCann Health Medical Communications, in accordance with Good Publication Practice guidelines.
All authors were involved in defining and conducting the research and preparing the manuscript.
JG and CS are employees of CMC Connect, McCann Health Medical Communications, and support clients in the development of plain language summaries of publications.