Division of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, SE-171 77, Solna, Sweden.
Cancer Proteomics Mass Spectrometry, Department of Oncology-Pathology, Karolinska Institutet, Science for Life Laboratory, SE-171 65, Solna, Sweden.
BMC Cancer. 2021 May 13;21(1):544. doi: 10.1186/s12885-021-08265-x.
One reason for the often late diagnosis of lung cancer (LC) may be that potentially-indicative sensations and symptoms are often diffuse, and may not be considered serious or urgent, making their interpretation complicated. However, with only a few exceptions, efforts to use people's own in-depth knowledge about prodromal bodily experiences has been a missing link in efforts to facilitate early LC diagnosis. In this study, we describe and discuss facilitators and challenges in our process of developing and initial testing an interactive, self-completion e-questionnaire based on patient descriptions of experienced prodromal sensations and symptoms, to support early identification of lung cancer (LC).
E-questionnaire items were derived from in-depth, detailed explorative interviews with individuals undergoing investigation for suspected LC. The descriptors of sensations/symptoms and the background items obtained were the basis for developing an interactive, individualized instrument, PEX-LC, which was refined for usability through think-aloud and other interviews with patients, members of the public, and clinical staff.
Major challenges in the process of developing PEX-LC related to collaboration among many actors, and design/user interface problems including technical issues. Most problems identified through the think-aloud interviews related to design/user interface problems and technical issues rather than content, for example we re-ordered questions to be in line with patients' chronological, rather than retrospective, descriptions of their experiences. PEX-LC was developed into a final e-questionnaire on a touch-screen smart tablet with one background module covering sociodemographic characteristics, 10 interactive, individualized modules covering early sensations and symptoms, and a 12th assessing current symptoms.
Close collaboration with patients throughout the process was intrinsic for developing PEX-LC. Similarly, we recognized the extent to which clinicians and technical experts were also important in this process. Similar endeavors should assure all necessary competence is included in the core research team, to facilitate timely progress. Our experiences developing PEX-LC combined with new empirical research suggest that this individualized, interactive e-questionnaire, developed through systematizing patients' own formulations of their prodromal symptom experiences, is both feasible for use and has potential value in the intended group.
肺癌（LC）常常延误诊断的原因之一可能是，那些具有潜在提示作用的感觉和症状往往具有弥散性，人们可能不会认为这些感觉和症状严重或紧急，从而导致对其的解读变得复杂。然而，除了极少数例外情况，人们利用自身对前驱身体体验的深入了解来促进早期 LC 诊断的努力一直是一个缺失的环节。在这项研究中，我们描述并讨论了在开发和初步测试基于患者对前驱感觉和症状的体验描述的交互式、自我完成电子问卷的过程中遇到的促进因素和挑战，该问卷旨在支持早期识别肺癌（LC）。
电子问卷的项目来源于对疑似 LC 患者进行深入、详细探索性访谈。获取的感觉/症状描述符和背景项目是开发交互式、个体化工具 PEX-LC 的基础，该工具通过与患者、公众成员和临床工作人员进行的“出声思考”和其他访谈进行可用性的完善。
开发 PEX-LC 过程中的主要挑战涉及许多行为者之间的协作，以及设计/用户界面问题，包括技术问题。通过“出声思考”访谈确定的大多数问题与设计/用户界面问题和技术问题有关，而与内容无关，例如，我们重新排列了问题，使其与患者对其体验的时间顺序描述一致，而不是回溯性描述。PEX-LC 被开发成一个带有触摸屏幕的智能平板电脑上的最终电子问卷，有一个背景模块涵盖社会人口特征，10 个交互式、个体化模块涵盖早期感觉和症状，以及第 12 个模块评估当前症状。
在整个开发过程中，与患者密切合作是开发 PEX-LC 的内在要求。同样，我们也认识到临床医生和技术专家在这一过程中的重要性。类似的努力应该确保核心研究团队具备所有必要的能力，以促进及时进展。我们在开发 PEX-LC 方面的经验以及新的实证研究表明，这种通过系统化患者自身对前驱症状体验的表述而开发的个体化、交互式电子问卷不仅具有使用的可行性，而且在预期的群体中具有潜在的价值。
