Endocrine Abstracts

Background: The National Patient Safety Alert (2020) and introduction of the NHS Steroid Emergency Card has led to the development of guidelines, publications and patient information, aiming to improve safety and management of adrenal insufficiency and prevention of adrenal crisis. Health Education England (HEE), ‘Plain English’ and NHS England guidance recommends patient information is accessible and clear to a broad range of people, to ensure patients are fully aware of their condition and management.

Aim: We aimed to produce a clear, understandable, patient information leaflet (PIS) for people with or at risk of adrenal insufficiency, following a recommended process of development.

Methods: The PIS was developed using an iterative process; from creating content to the first evaluation of the leaflet by health care professionals. Content was co-authored by three adrenal endocrine specialist nurses. The leaflet was assessed for readability using the Flesch Reading Ease/Flesch Kincaid Grade Level available via Microsoft Word and the online readability assessment tool, Hemmingway Editor. A group of 50 endocrine specialist nurses assessed how understandable and clear the content of the PIS was based on HEE’s ‘health literacy-how to guide’ and four step user testing. Specifically they were asked to find 15 key points from the PIS.

Results: The leaflet required several iterations to meet an acceptable readability score (Flesch Reading Ease-60.0, Flesch Kincaid Grade level-8.2, Hemmingway Editor, Grade 6-Good). Feedback from the group of endocrine specialist nurses was that the PIS target group was not clear, however key information was easily found.

Conclusion: This process has highlighted the importance of collaborating with key stakeholders, utilising available guidelines and readability tools in the development and evaluation of PIS. The leaflet requires further iteration and review, by both clinicians and people with or at risk of adrenal insufficiency, before being implemented in practice.