Assessing Internet-Based Information used to aid patient decision-making for pelvic exenteration for locally advanced and recurrent rectal cancer

Abstract Background: To establish what online decision aids are currently available for patients contemplating pelvic exenteration (PE) for locally advanced and recurrent rectal cancer (LARC and LRRC). Methodology: A grey literature review was carried out using the Google SearchTM engine undertaken using a predefined search strategy (PROSPERO database CRD42019122933). Written health information was assessed using the DISCERN criteria and International Patient Decision Aids Standards (IPDAS) with readability content assessed using the Flesch-Kincaid score.Results: Google search yielded 27,782,200 results for the predefined search criteria. 131 sources were screened resulting in the analysis of 6 sources. No sources were identified as a decision aid according to the IPDAS criteria. All sources were deemed acceptable quality of written health information, scoring a global score of 3. for the DISCERN written assessment. The median Flesch-Kincaid ease was 50.85 (32.5-80.8) equating to a reading age of 15-18 years. Conclusions: This study has found that there is a paucity of online information for patients contemplating PE. Sources that are available are aimed at a high health literate patient. Given the considerable morbidity associated with this surgery there is a desperate need for high quality relevant information in this area. We would suggest the development of a PDA to improve decision making and ultimately improve patient experience.