Using patients’ own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer
Abstract Background 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 peop...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2021-05-01
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| Series: | BMC Cancer |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12885-021-08265-x |
| _version_ | 1829533545682436096 |
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| author | Adrian Levitsky Britt-Marie Bernhardson Ingela Henoch Maria Olin Karl Kölbeck Nadja Rystedt Carol Tishelman Lars E. Eriksson |
| author_facet | Adrian Levitsky Britt-Marie Bernhardson Ingela Henoch Maria Olin Karl Kölbeck Nadja Rystedt Carol Tishelman Lars E. Eriksson |
| author_sort | Adrian Levitsky |
| collection | DOAJ |
| description | Abstract Background 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). Methods 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. Results 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. Conclusions 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. |
| first_indexed | 2024-12-16T18:58:47Z |
| format | Article |
| id | doaj.art-a3e93b88c502499c9a7388f84180bd7e |
| institution | Directory Open Access Journal |
| issn | 1471-2407 |
| language | English |
| last_indexed | 2024-12-16T18:58:47Z |
| publishDate | 2021-05-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Cancer |
| spelling | doaj.art-a3e93b88c502499c9a7388f84180bd7e2022-12-21T22:20:27ZengBMCBMC Cancer1471-24072021-05-0121111010.1186/s12885-021-08265-xUsing patients’ own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancerAdrian Levitsky0Britt-Marie Bernhardson1Ingela Henoch2Maria Olin3Karl Kölbeck4Nadja Rystedt5Carol Tishelman6Lars E. Eriksson7Division of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska InstitutetDivision of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska InstitutetSahlgrenska academy, University of Gothenburg, Institute of Health and Care SciencesLung Oncology Center, Theme Cancer, Karolinska University HospitalLung Oncology Center, Theme Cancer, Karolinska University HospitalCenter for Medical Technology and Radiation Physics, University Hospital of UmeåDivision of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska InstitutetDivision of Innovative Care Research, Department of Learning, Informatics, Management and Ethics, Karolinska InstitutetAbstract Background 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). Methods 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. Results 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. Conclusions 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.https://doi.org/10.1186/s12885-021-08265-xLung cancerRespiratory diseasesThink-aloud interviewsInstrument developmentQuestionnaire designE-questionnaire |
| spellingShingle | Adrian Levitsky Britt-Marie Bernhardson Ingela Henoch Maria Olin Karl Kölbeck Nadja Rystedt Carol Tishelman Lars E. Eriksson 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 Lung cancer Respiratory diseases Think-aloud interviews Instrument development Questionnaire design E-questionnaire |
| title | Using patients’ own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer |
| title_full | Using patients’ own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer |
| title_fullStr | Using patients’ own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer |
| title_full_unstemmed | Using patients’ own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer |
| title_short | Using patients’ own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer |
| title_sort | using patients own knowledge of early sensations and symptoms to develop an interactive individualized e questionnaire to facilitate early diagnosis of lung cancer |
| topic | Lung cancer Respiratory diseases Think-aloud interviews Instrument development Questionnaire design E-questionnaire |
| url | https://doi.org/10.1186/s12885-021-08265-x |
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