Sussex Health Outcomes Research and Education in Cancer (SHORE-C), Brighton and Sussex Medical School, University of Sussex, Brighton, UK.
Support Care Cancer. 2021 Aug;29(8):4199-4207. doi: 10.1007/s00520-021-06034-x. Epub 2021 Feb 8.
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.
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.
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.
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.
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.
皮肤鳞状细胞癌(cSCC)是全球最常见的非黑色素瘤皮肤癌之一。虽然通常可以治疗,但高危或晚期疾病患者的治疗选择很少,可用资源有限。本综述评估了有哪些在线信息资源可向患者及其家属提供有关高危或晚期 cSCC 的信息。
通过谷歌搜索,使用了 8 个术语,如“晚期皮肤鳞状细胞癌患者信息”,进行了搜索。剔除广告后,对每个搜索的前 3 页/30 个结果进行了重复筛选,然后根据入选标准进行了筛选。网站需要在过去 5 年内更新,免费访问,专门为患者设计,并提及晚期疾病或高危情况。使用 DISCERN 工具评估其余结果。
在最终的 240 个结果中,有 121 个是重复的,104 个不符合入选标准。其余 15 个来源主要针对美国受众,使用了不同的术语,揭示了不同的治疗途径。只有 3 个网站被认为是高质量的信息来源。
患者可获得的关于高危或晚期 cSCC 的在线信息很少。现有的信息往往过于科学或临床,缺乏对疾病和治疗选择的清晰说明。
需要进一步努力提高在线资源的完整性和可访问性,并为患者指明最可靠的信息。这应包括患者主导的研究、临床教育和信息开发的内容。