COMMUNICATING RESEARCH FINDINGS TO PATIENTS:: Comparison of readability of Patient Lay Summaries written by eight clinical disciplines of the Cystic Fibrosis (CF) Multidisciplinary Team (MDT).

Editor,

Communication of research findings to lay people including patients is vitally important. “No research about me without me” is now becoming a widely used phrase1 and we should be doing our best to involve patients and the public in all aspects of our research from design, execution of studies through to publication and dissemination. Many journals now encourage or request lay summaries as part of the publishing process. New digital tools have been developed that can objectively score written text for its readability against established algorithms.2 Readability metrics use formulae that can score or grade a text based on number of syllables per words, words per sentence or word familiarity.

A well-written Lay Summary with good readability scores may assist intended lay readers and service users, to better understand the content of Lay Summaries that may in turn improve their health literacy. Today, many disease states are managed by the multidisciplinary team (MDT). The cystic fibrosis multidisciplinary team (CF-MDT) forms an important component of CF patient care and consists of healthcare professionals from medicine, nursing, physiotherapy, dietetics, microbiology, pharmacy, psychology and social care. To date, there have been no studies which have compared the readability of patient-facing lay summaries of research findings prepared by these different disciplines within the CF MDT. It was therefore the aim of this study to compare the readability of lay summaries prepared for patients by the different CF MDT disciplines within their own subject area.

Lay summaries (n=104) were analysed from CF Research News (CFRN), which is an online e-resource hosted by the European Cystic Fibrosis Society (ECFS) (https://www.ecfs.eu/publications/cf-research-news). All lay summaries were freely available and in the public domain. Lay summaries conformed to a standard template of preparation. Research articles were selected under the eight discipline headings of: Basic Science, Clinical Trials, Epidemiology/Models of Care, Endocrinology, Microbiology, Nutrition, Psychosocial and Pulmonology. A total of 104 lay summaries were selected, comprising of 13 lay summaries from each discipline. Readability analyses of the Lay Summaries was performed as previously described.3

Analyses of readability scores across eight CF disciplines are shown in Table 1. The mean readability of lay summaries combining all disciplines was 41.1 (Flesch Reading Ease) and 10 (Flesch-Kincaid Grade Level). Nutrition had the highest readability when considering all readability scores, and microbiology consistently had the lowest readability. This may be attributed to microbiology using binomial names to identify taxonomic names of microorganisms. Binomial names are comprised of two parts, i.e. the genus name and the species name, which is used in its Latin form. Binomial names often consist of polysyllabic words e.g. Actinobacillus actinomycetemcomitans (6+9=15 syllables), an important causal bacterium of infective endocarditis,4 thus making microbiology text rich in polysyllabic words, leading to diminished readability.

Table 1

Differences in readability grades/scores between CF disciplines of lay summaries

With an increasingly complex burden of care in cystic fibrosis (CF), PwCF enter the Attention Economy for their attention relating to all aspects of their treatments. These include time requirements to read and understand patient information leaflets (PIL) that accompany all aspects of their care, including device inserts, antibiotics and more recently, CFTR medicines. CF multidisciplinary team (MDT) healthcare professionals should aim to communicate to the PwCF such information at a level that is understood and is commensurate with the PwCF’s level of Health Literacy. Training and other supports should be available to empower the clinical team to communicate research findings as effectively as possible to their patients, carers, family and friends, in order to maximise the benefits for the patient’s health literacy and disease self-management.