Background: Cancer patients commonly self-report subtle cognitive impairment. While most common during chemotherapy, impairment can occur before and persist after cancer treatment. The term cancer-related cognitive impairment (CRCI) has emerged to replace ‘chemo-brain’. Despite its prevalence, patients receive little information about CRCI. To address this, Cancer Council Australia released a CRCI factsheet. This study aimed to explore the impact of accessing this CRCI information on patients.
Methods: The factsheet was reviewed against a linguistic framework for evaluating healthcare text and readability tests. Cancer survivors were recruited, via social media or referral by health professionals, to explore patient perspectives of the factsheet. Participants completed a questionnaire assessing pre- and post-factsheet CRCI knowledge. Semi-structured interviews were conducted and analysed via thematic analysis using a framework approach.
Results: The factsheet demonstrated coverage of most elements in the linguistic framework. Readability assessment indicated factsheet is written at a higher level (11.26 years of schooling) than required for the general Australian community.
Interviews with 17 participants generated five themes: perceptions of the factsheet; experience of CRCI; strategies used to manage CRCI; interactions with healthcare system; and impact of the factsheet. Overall, the factsheet’s presentation and wording were acceptable to participants. Its ability to normalise and raise awareness for CRCI helped validate patients’ perceptions of their symptoms. The factsheet’s potential as first intervention in a stepped-care approach was identified. Access to the factsheet may encourage patients to self-report CRCI to healthcare professionals. Barriers to self-reporting include negative perceptions of the healthcare system, lack of perceived need, and limited knowledge of CRCI.
Conclusion: The factsheet presentation and content were robust, and while participant perspectives reflected different preferences and experiences, it was well-received overall. We recommend the factsheet be provided to all cancer patients during treatment planning discussions. Policy changes are recommended to ensure ongoing monitoring of symptoms.