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本文引用的文献

1
Systemic treatment of patients with advanced cutaneous squamous cell carcinoma: response rates and outcomes of the regimes used.晚期皮肤鳞状细胞癌患者的系统性治疗:所使用方案的缓解率和结果。
Eur J Cancer. 2020 Mar;127:108-117. doi: 10.1016/j.ejca.2019.12.018. Epub 2020 Jan 28.
2
A summary of high quality online information resources for parents with cancer who have adolescent and young adult children: A scoping review.癌症患儿家长的高质量在线信息资源概述:范围综述。
Psychooncology. 2019 Dec;28(12):2323-2335. doi: 10.1002/pon.5274. Epub 2019 Nov 11.
3
The extent to which cancer patients trust in cancer-related online information: a systematic review.癌症患者对癌症相关在线信息的信任程度:一项系统综述
PeerJ. 2019 Sep 30;7:e7634. doi: 10.7717/peerj.7634. eCollection 2019.
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Updates on the Systemic Treatment of Advanced Non-melanoma Skin Cancer.晚期非黑素瘤皮肤癌全身治疗的进展
Front Med (Lausanne). 2019 Jul 10;6:160. doi: 10.3389/fmed.2019.00160. eCollection 2019.
5
Satisfaction with Information Provision and Health-related Quality of Life in Basal and Squamous Cell Carcinoma Patients: A Cross-sectional Population-based Study.基底细胞癌和鳞状细胞癌患者对信息提供的满意度及与健康相关的生活质量:一项基于人群的横断面研究。
Acta Derm Venereol. 2019 Sep 1;99(10):933-934. doi: 10.2340/00015555-3226.
6
PD-1 Blockade with Cemiplimab in Advanced Cutaneous Squamous-Cell Carcinoma.西妥昔单抗联合 PD-1 抑制剂治疗晚期皮肤鳞状细胞癌的疗效和安全性
N Engl J Med. 2018 Jul 26;379(4):341-351. doi: 10.1056/NEJMoa1805131. Epub 2018 Jun 4.
7
Epidemiological trends in skin cancer.皮肤癌的流行病学趋势
Dermatol Pract Concept. 2017 Apr 30;7(2):1-6. doi: 10.5826/dpc.0702a01. eCollection 2017 Apr.
8
Internet Health Information Seeking and the Patient-Physician Relationship: A Systematic Review.互联网健康信息搜索与医患关系:一项系统综述。
J Med Internet Res. 2017 Jan 19;19(1):e9. doi: 10.2196/jmir.5729.
9
Supportive care needs and distress in patients with non-melanoma skin cancer: Nothing to worry about?非黑色素瘤皮肤癌患者的支持性护理需求与痛苦:没什么可担心的?
Eur J Oncol Nurs. 2016 Feb;20:150-5. doi: 10.1016/j.ejon.2015.07.006. Epub 2015 Jul 30.
10
Diagnosis and treatment of invasive squamous cell carcinoma of the skin: European consensus-based interdisciplinary guideline.皮肤浸润性鳞状细胞癌的诊断与治疗:基于欧洲共识的跨学科指南
Eur J Cancer. 2015 Sep;51(14):1989-2007. doi: 10.1016/j.ejca.2015.06.110. Epub 2015 Jul 25.

高级或高危皮肤鳞状细胞癌信息来源的在线综述。

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

机构信息

Sussex Health Outcomes Research and Education in Cancer (SHORE-C), Brighton and Sussex Medical School, University of Sussex, Brighton, UK.

出版信息

Support Care Cancer. 2021 Aug;29(8):4199-4207. doi: 10.1007/s00520-021-06034-x. Epub 2021 Feb 8.

DOI:10.1007/s00520-021-06034-x
PMID:33558963
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8236469/
Abstract

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.

摘要

目的

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。

方法

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。

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。

结论

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。

实践意义

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。