Hopmans Wendy, Damman Olga C, Timmermans Danielle R M, Haasbeek Cornelis J A, Slotman Ben J, Senan Suresh
Department of Public and Occupational Health, EMGO+ Institute for Health and care research, VU University Medical Center, Van der Boechorststraat 7, 1081 BT, Amsterdam, The Netherlands.
Department of Radiation Oncology, VU University Medical Center, De Boelelaan 1117, 1007MB, Amsterdam, The Netherlands.
BMC Med Inform Decis Mak. 2014 Dec 7;14:116. doi: 10.1186/s12911-014-0116-4.
Online cancer information can support patients in making treatment decisions. However, such information may not be adequately tailored to the patient's perspective, particularly if healthcare professionals do not sufficiently engage patient groups when developing online information. We applied qualitative user testing during the development of a patient information website on stereotactic ablative radiotherapy (SABR), a new guideline-recommended curative treatment for early-stage lung cancer.
We recruited 27 participants who included patients referred for SABR and their relatives. A qualitative user test of the website was performed in 18 subjects, followed by an additional evaluation by users after website redesign (N = 9). We primarily used the 'thinking aloud' approach and semi-structured interviewing. Qualitative data analysis was performed to assess the main findings reported by the participants.
Study participants preferred receiving different information that had been provided initially. Problems identified with the online information related to comprehending medical terminology, understanding the scientific evidence regarding SABR, and appreciating the side-effects associated with SABR. Following redesign of the website, participants reported fewer problems with understanding content, and some additional recommendations for better online information were identified.
Our findings indicate that input from patients and their relatives allows for a more comprehensive and usable website for providing treatment information. Such a website can facilitate improved patient participation in treatment decision-making for cancer.
在线癌症信息可为患者做出治疗决策提供支持。然而，此类信息可能未充分从患者角度进行定制，尤其是在医疗保健专业人员开发在线信息时未充分与患者群体互动的情况下。我们在一个关于立体定向消融放疗（SABR）的患者信息网站的开发过程中应用了定性用户测试，SABR是一种新的指南推荐的早期肺癌根治性治疗方法。
我们招募了27名参与者，包括被转诊接受SABR治疗的患者及其亲属。对18名受试者进行了该网站的定性用户测试，在网站重新设计后由用户进行了额外评估（N = 9）。我们主要采用“边想边说”方法和半结构化访谈。进行定性数据分析以评估参与者报告的主要发现。
研究参与者更喜欢接收最初提供的不同信息。在线信息存在的问题涉及理解医学术语、理解关于SABR的科学证据以及认识到与SABR相关的副作用。网站重新设计后，参与者报告在理解内容方面的问题减少了，并且确定了一些关于更好的在线信息的其他建议。
我们的研究结果表明，患者及其亲属的意见有助于创建一个更全面、更实用的提供治疗信息的网站。这样的网站可以促进患者更好地参与癌症治疗决策。
