An online review of informational sources for advanced or high-risk cutaneous squamous cell carcinoma

OBJECTIVE: Cutaneous squamous cell carcinoma (cSCC) is one of the most prevalent non-melanoma skin cancers worldwide. While usually treatable, patients with high-risk or advanced disease have few treatment options and limited resources available. This review assesses what online information resources are available to patients and their families about either high-risk or advanced cSCC. METHODS: Searches were run, via Google, using 8 terms such as ‘advanced cutaneous squamous cell carcinoma patient information’. Advertisements were removed and the first 3 pages/30 results from each search were screened for duplicates and then against eligibility criteria. Websites needed to have been updated within the past 5 years, be freely accessible, designed specifically for patients and refer to the advanced disease or high-risk setting. Remaining results were assessed using the DISCERN tool. RESULTS: Of the final 240 results, 121 were duplicates and 104 were ineligible. The remaining 15 sources were predominantly aimed at American audiences, used variable terminology and revealed differing treatment pathways. Only 3 sites were deemed as ‘high’-quality information sources. CONCLUSION: There is a lack of accessible online information on high-risk or advanced cSCC for patients. What is available is often too scientific or clinical and lacks clarity about the disease and treatment options. PRACTICE IMPLICATIONS: Further work is needed to improve the integrity and accessibility of online sources and to signpost patients to the most reliable information. This should include elements of patient led research, clinical education and information development.