Using patients' own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer

作     者：Levitsky, Adrian Bernhardson, Britt-Marie Henoch, Ingela Olin, Maria Kolbeck, Karl Rystedt, Nadja Tishelman, Carol Eriksson, Lars E. 

作者机构：Karolinska Inst Dept Learning Informat Management & Eth Div Innovat Care Res SE-17177 Solna Sweden Karolinska Inst Dept Oncol Pathol Sci Life Lab Canc Prote Mass Spectrometry SE-17165 Solna Sweden Univ Gothenburg Sahlgrenska Acad Inst Hlth & Care Sci SE-40530 Gothenburg Sweden Karolinska Univ Hosp Lung Oncol Ctr Theme Canc SE-17176 Solna Sweden Univ Hosp Umea Ctr Med Technol & Radiat Phys SE-90185 Umea Sweden Stockholm Cty Council Ctr Hlth Econ Informat & Hlth Syst Res CHIS Stockholm Hlth Care Serv SLSO SE-11365 Stockholm Sweden Univ London Sch Hlth Sci London EC1V 0HB England Karolinska Univ Hosp Med Unit Infect Dis SE-14186 Huddinge Sweden 

出 版 物：《BMC CANCER》 (BMC癌症)

年 卷 期：2021年第21卷第1期

页      面：544-544页

核心收录：

学科分类：1002[医学-临床医学] 100214[医学-肿瘤学] 10[医学] 

基　　金：Vardal Foundation [2014-0044] Swedish Research Council [2016-01712, 2019-01222] Strategic Research Area Health Care Science (SFO-V) [2-2764/2018] Stockholm Cancer Research Foundation Karolinska Institutet Vinnova [2019-01222] Funding Source: Vinnova Forte [2019-01222] Funding Source: Forte Swedish Research Council [2016-01712, 2019-01222] Funding Source: Swedish Research Council 

主　　题：Lung cancer Respiratory diseases Think-aloud interviews Instrument development Questionnaire design E-questionnaire Internet Usability Tablet computers User-computer interface 

摘      要：BackgroundOne 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).MethodsE-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 *** 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 *** collaboration with patients throughout the process was intrinsic for developing PEX-LC. Similarly, we recognize