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

BMC Cancer

Nadja Rystedt¹  Britt-Marie Bernhardson²  Adrian Levitsky³  Carol Tishelman⁴  Lars E. Eriksson⁵  Karl Kölbeck⁶  Maria Olin⁶  Ingela Henoch⁷ 

[1] Center for Medical Technology and Radiation Physics, University Hospital of Umeå, SE-901 85, Umeå, Sweden;Division of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, SE-171 77, Solna, Sweden;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;Division of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, SE-171 77, Solna, Sweden;Center for Health Economy, Informatics and Health System Research (CHIS), Stockholm Health Care Services (SLSO), Stockholm County Council, SE-113 65, Stockholm, Sweden;Division of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, SE-171 77, Solna, Sweden;School of Health Sciences, City, University of London, Northampton Square, EC1V 0HB, London, UK;Medical Unit Infectious Diseases, Karolinska University Hospital, SE-141 86, Huddinge, Sweden;Lung Oncology Center, Theme Cancer, Karolinska University Hospital, SE-171 76, Solna, Sweden;Sahlgrenska academy, University of Gothenburg, Institute of Health and Care Sciences, SE-405 30, Gothenburg, Sweden;

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

DOI  :  10.1186/s12885-021-08265-x

来源: Springer

【 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 staff.ResultsMajor 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.ConclusionsClose 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.

【 授权许可】

CC BY