Background: There are many information resources available for people with primary brain tumour (PwBT) and their caregivers related to the disease. However, brain tumours and treatments often lead to cognitive decline, visual changes, and fatigue. For information aimed at this population to be valuable, it must be understandable to people of diverse backgrounds, cognitive abilities, and health literacy levels. To be useful, resources should support people to take action based on the information provided.
Aim: To critically evaluate the information resources currently available for PwBT and their caregivers.
Methods: Relevant organisations and information resources were selected from first page Google results using search terms related to brain tumours. The readability of written materials was assessed using the Sydney Health Literacy Lab editor, Gunning Fog Index, Coleman Liau Index, Flesch Grade Level, Automated Readability Index, and the Simple Measure of Gobbledygook. A grade 8 reading level is recommended for most people to easily understand the content. The Patient Education Materials Assessment Tool was used to evaluate resources’ understandability and actionability. Understandability refers to the extent a resource can be processed by consumers of diverse backgrounds. Actionability refers to whether a resource tells consumers what they can do with the information presented. A resource is understandable and actionable if it scores >70% in its respective domain. We also noted resources’ accessibility options (e.g., text-to-speech), representation of diverse populations, and information transparency (e.g., providing references).
Results: We selected 27 organisations from four countries (Australia, New Zealand, United Kingdom, & Canada) for review. From these organisations, 376 materials were assessed; 351 were text-based and 25 were videos. The mean understandability and actionability of all resources were 52% and 21% respectively. The mean readability score of written materials was 10.6 years. Most resources lacked accessibility options and had limited representation of underserved populations. The transparency of information was mixed.
Conclusion: The resources available online are not fit for PwBT or their caregivers. Resources have a high reading level, are not easily understandable by the general public, and poorly communicate how the information can be used. These issues are compounded by the cognitive challenges associated with brain tumours. In future, information resource developers must consider the population they aim to inform and critically evaluate the readability, understandability, and actionability of the information.