Development of an Educational Website for Patients With Cancer and Preexisting Autoimmune Diseases Considering Immune Checkpoint Blockers: Usability and Acceptability Study.

IF 3.3 Q2 ONCOLOGY
JMIR Cancer Pub Date : 2024-10-25 DOI:10.2196/53443
Maria A Lopez-Olivo, Maria E Suarez-Almazor, Gabrielle F Duhon, McKenna Cherry, Huifang Lu, Cassandra Calabrese, Mehmet Altan, Hussain Tawbi, Alexa Meara, Clifton O Bingham, Adi Diab, Viola B Leal, Robert J Volk
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引用次数: 0

Abstract

Background: Patients with cancer and an underlying autoimmune disease who are considering immune checkpoint blockers (ICBs) need to know about the benefits and risks of severe immune-related adverse events and flares of the autoimmune condition.

Objective: This study aims to develop and alpha test an educational website for patients with cancer.

Methods: Learning topics, images, and website architecture (including flow and requirements) were developed and iteratively reviewed by members of a community scientist program, a patient advisory group, and content experts. Alpha testing was performed, measuring the site's usability using the Suitability Assessment of Materials and its acceptability using the Ottawa Acceptability Measure.

Results: The website included a home page; general information about ICBs; comprehensive modules on the benefits and risks of ICBs for patients with cancer and preexisting autoimmune diseases; general wellness information; and features such as a quiz, additional resources, and a glossary. For the alpha testing, 9 users assessed the newly developed website. Patient reviewers (n=5) had rheumatoid arthritis, Crohn disease, Sjogren syndrome, or vasculitis. Health care provider reviewers (n=4) were medical oncologists or rheumatologists. The median Suitability Assessment of Materials rating was 75 (IQR 70-79; range 0-100) for patients versus 66 (IQR 57-72; range 0-100) for providers (scores ≥70 indicate no substantial changes needed). Recommendations for improvement, mostly involving navigation and accessibility, were addressed. All participants expressed that the website was acceptable and balanced in terms of discussion of benefits and harms. Because half (2/4, 50%) of the providers suggested we increase the amount of information, we extended the content on the impact of having an autoimmune disease when considering ICB treatment, the probability of flares, and the management of flares in this context.

Conclusions: The feedback led to minor revisions to enhance readability, navigation, and accessibility, ensuring the website's suitability as a decision-making aid. The newly developed website could become a supporting tool to facilitate patient-physician discussion regarding ICBs.

为考虑使用免疫检查点阻断剂的癌症和既往自身免疫性疾病患者开发教育网站:可用性和可接受性研究
背景:正在考虑使用免疫检查点阻断剂(ICBs)的癌症和潜在自身免疫性疾病患者需要了解严重免疫相关不良事件和自身免疫性疾病复发的益处和风险:本研究旨在为癌症患者开发一个教育网站并进行阿尔法测试:学习主题、图像和网站架构(包括流程和要求)已开发完成,并由社区科学家项目成员、患者咨询小组和内容专家反复审核。进行了阿尔法测试,使用 "材料适用性评估 "衡量网站的可用性,并使用 "渥太华可接受性衡量标准 "衡量网站的可接受性:该网站包括一个主页;关于 ICB 的一般信息;关于癌症和原有自身免疫性疾病患者使用 ICB 的益处和风险的综合模块;一般健康信息;以及测验、其他资源和词汇表等功能。在阿尔法测试中,9 名用户对新开发的网站进行了评估。患者评审者(人数=5)患有类风湿性关节炎、克罗恩病、Sjogren 综合症或血管炎。医护人员评审者(4 人)为肿瘤内科医生或风湿病医生。患者的材料适用性评估评分中位数为 75 分(IQR 70-79;范围 0-100),而医疗服务提供者的评分中位数为 66 分(IQR 57-72;范围 0-100)(评分≥70 表示无需进行实质性更改)。提出的改进建议主要涉及导航和可访问性。所有参与者都表示,网站在讨论益处和害处方面是可以接受和平衡的。由于有一半(2/4,50%)的医疗服务提供者建议我们增加信息量,因此我们扩展了内容,介绍了在考虑 ICB 治疗时患有自身免疫性疾病的影响、复发的概率以及在这种情况下复发的处理方法:根据反馈意见,我们对网站进行了小幅修改,以提高可读性、导航性和可访问性,确保网站适合作为决策辅助工具。新开发的网站可以成为一个辅助工具,促进患者与医生就 ICB 进行讨论。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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来源期刊
JMIR Cancer
JMIR Cancer ONCOLOGY-
CiteScore
4.10
自引率
0.00%
发文量
64
审稿时长
12 weeks
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