OBJECTIVES: Patients and caregivers are an increasingly important audience for consumption of information related to their disease states. While digital innovation has improved access to publications, technical language represents a barrier to understanding for the lay population. The inclusion of PLS in publications have made scientific data more digestible and accessible for these audiences. PRO publications are of particular interest as they describe the experience of patients, burden of illness, and potential improvements with disease interventions. This research examines the prevalence and characterization of PLS in PRO publications.

METHODS: This was a targeted literature review in PubMed of open access clinical trials published in the last 5 years (2018-2023) using the search term “patient reported outcomes”. PROs were defined as any report of the status of a subject’s condition reported directly by the subject, without any external interpretation and PLS were defined broadly as short, text-only summaries of an article using layman terms. The primary outcome was inclusion of PLS. The secondary outcome was characterization of the PLS, including reading level and format.

RESULTS: A total of 3,594 publications were identified. Of those, 2,615 reported PROs and were included for analysis. A total of 876 PROs publications included PLS. The format of the PLS were widely varied, including titles such as “key points”, “what is known about this topic”, or “lay summary”. The majority of PLS were above the general accepted readability recommendation for less than eighth grade reading level for lay materials.

CONCLUSIONS: There is an unmet need for incorporation of PLS into scientific publications to diversify readership, reduce information inequality, and meet the growing demand for easily digestible information, particularly in publications that would be of most interest to patients, such as PRO publications. Standards and guidance for PLS need to be established to support authors upon submission to scientific journals.