Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study
Abstract Background The ELCID (Early Lung Cancer Investigation and Diagnosis) trial was a feasibility randomised controlled trial examining the effect on lung cancer diagnosis of lowering the threshold for referral for urgent chest x-ray for smokers and recent ex-smokers, aged over 60 years with new...
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2018-08-01
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Online Access: | http://link.springer.com/article/10.1186/s13063-018-2803-4 |
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record_format |
Article |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
author |
Hayley C. Prout Allan Barham Emily Bongard Rhiannon Tudor-Edwards Gareth Griffiths Willie Hamilton Emily Harrop Kerry Hood Chris N. Hurt Rosie Nelson Catherine Porter Kirsty Roberts Trevor Rogers Emma Thomas-Jones Angela Tod Seow Tien Yeo Richard D. Neal Annmarie Nelson |
spellingShingle |
Hayley C. Prout Allan Barham Emily Bongard Rhiannon Tudor-Edwards Gareth Griffiths Willie Hamilton Emily Harrop Kerry Hood Chris N. Hurt Rosie Nelson Catherine Porter Kirsty Roberts Trevor Rogers Emma Thomas-Jones Angela Tod Seow Tien Yeo Richard D. Neal Annmarie Nelson Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study Trials Feasibility studies Lung neoplasms Patient preference Primary healthcare Qualitative research Quality of life |
author_facet |
Hayley C. Prout Allan Barham Emily Bongard Rhiannon Tudor-Edwards Gareth Griffiths Willie Hamilton Emily Harrop Kerry Hood Chris N. Hurt Rosie Nelson Catherine Porter Kirsty Roberts Trevor Rogers Emma Thomas-Jones Angela Tod Seow Tien Yeo Richard D. Neal Annmarie Nelson |
author_sort |
Hayley C. Prout |
title |
Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study |
title_short |
Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study |
title_full |
Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study |
title_fullStr |
Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study |
title_full_unstemmed |
Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study |
title_sort |
patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study |
publisher |
BMC |
series |
Trials |
issn |
1745-6215 |
publishDate |
2018-08-01 |
description |
Abstract Background The ELCID (Early Lung Cancer Investigation and Diagnosis) trial was a feasibility randomised controlled trial examining the effect on lung cancer diagnosis of lowering the threshold for referral for urgent chest x-ray for smokers and recent ex-smokers, aged over 60 years with new chest symptoms. The qualitative component aimed to explore the feasibility of individually randomising patients to an urgent chest x-ray or not and to investigate any barriers to patient recruitment and participation. We integrated this within the feasibility trial to inform the design of any future definitive trial, particularly in view of the lack of research exploring symptomatic patients’ experiences of participating in diagnostic trials for possible/suspected lung cancer. Although previous studies contributed valuable information concerning screening for lung cancer and patient participation in trials, this paper is the first to explore issues relating to this specific patient group. Methods Qualitative interviews were conducted with 21 patients, comprising 9 who had been randomised to receive an immediate chest x-ray, 10 who were randomised to receive the standard treatment according to the National Institute for Health and Care Excellence guidelines, and 2 who chose not to participate in the trial. Interviews were analysed using a framework approach. Results The findings of this analysis showed that altruism, personal benefit and the reassurance of not having lung cancer were important factors in patient participation. However, patients largely believed that being in the intervention arm was more beneficial, highlighting a lack of understanding of clinical equipoise. Disincentives to participation in the trial included the stigmatisation of patients who smoked (given the inclusion criteria). Although the majority of patients reported that they were happy with the trial design, there was evidence of poor understanding. Last, for several patients, placing trust in health professionals was preferred to understanding the trial processes. Conclusions The integration of a qualitative study focusing on participant experience as a secondary outcome of a feasibility trial enabled exploration of patient response to participation and recruitment. The study demonstrated that although it is feasible to recruit patients to the ELCID trial, more work needs to be done to ensure an understanding of study principles and also of smoking stigmatisation. Trial registration ClinicalTrials.gov, NCT01344005. Registered on 27 April 2011. |
topic |
Feasibility studies Lung neoplasms Patient preference Primary healthcare Qualitative research Quality of life |
url |
http://link.springer.com/article/10.1186/s13063-018-2803-4 |
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doaj-4f4e2ab525ad447b8dd2de5addcde80e2020-11-24T21:49:10ZengBMCTrials1745-62152018-08-0119111310.1186/s13063-018-2803-4Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative studyHayley C. Prout0Allan Barham1Emily Bongard2Rhiannon Tudor-Edwards3Gareth Griffiths4Willie Hamilton5Emily Harrop6Kerry Hood7Chris N. Hurt8Rosie Nelson9Catherine Porter10Kirsty Roberts11Trevor Rogers12Emma Thomas-Jones13Angela Tod14Seow Tien Yeo15Richard D. Neal16Annmarie Nelson17Marie Curie Palliative Care Research Centre, School of Medicine, Cardiff UniversityPatient RepresentativeCentre for Trials Research, Cardiff UniversityCentre for Health Economics and Medicines Evaluation, Bangor UniversitySouthampton Clinical Trials Unit, University of SouthamptonUniversity of Exeter Medical SchoolMarie Curie Palliative Care Research Centre, School of Medicine, Cardiff UniversityCentre for Trials Research, Cardiff UniversityCentre for Trials Research, Cardiff UniversityMarie Curie Palliative Care Research Centre, School of Medicine, Cardiff UniversityCentre for Trials Research, Cardiff UniversitySchool of Social and Community Medicine, University of BristolDoncaster Royal Infirmary, Doncaster and Bassetlaw NHS Foundation TrustCentre for Trials Research, Cardiff UniversitySchool of Nursing and Midwifery, The University of SheffieldCentre for Health Economics and Medicines Evaluation, Bangor UniversityAcademic Unit of Primary Care, Leeds Institute of Health SciencesMarie Curie Palliative Care Research Centre, School of Medicine, Cardiff UniversityAbstract Background The ELCID (Early Lung Cancer Investigation and Diagnosis) trial was a feasibility randomised controlled trial examining the effect on lung cancer diagnosis of lowering the threshold for referral for urgent chest x-ray for smokers and recent ex-smokers, aged over 60 years with new chest symptoms. The qualitative component aimed to explore the feasibility of individually randomising patients to an urgent chest x-ray or not and to investigate any barriers to patient recruitment and participation. We integrated this within the feasibility trial to inform the design of any future definitive trial, particularly in view of the lack of research exploring symptomatic patients’ experiences of participating in diagnostic trials for possible/suspected lung cancer. Although previous studies contributed valuable information concerning screening for lung cancer and patient participation in trials, this paper is the first to explore issues relating to this specific patient group. Methods Qualitative interviews were conducted with 21 patients, comprising 9 who had been randomised to receive an immediate chest x-ray, 10 who were randomised to receive the standard treatment according to the National Institute for Health and Care Excellence guidelines, and 2 who chose not to participate in the trial. Interviews were analysed using a framework approach. Results The findings of this analysis showed that altruism, personal benefit and the reassurance of not having lung cancer were important factors in patient participation. However, patients largely believed that being in the intervention arm was more beneficial, highlighting a lack of understanding of clinical equipoise. Disincentives to participation in the trial included the stigmatisation of patients who smoked (given the inclusion criteria). Although the majority of patients reported that they were happy with the trial design, there was evidence of poor understanding. Last, for several patients, placing trust in health professionals was preferred to understanding the trial processes. Conclusions The integration of a qualitative study focusing on participant experience as a secondary outcome of a feasibility trial enabled exploration of patient response to participation and recruitment. The study demonstrated that although it is feasible to recruit patients to the ELCID trial, more work needs to be done to ensure an understanding of study principles and also of smoking stigmatisation. Trial registration ClinicalTrials.gov, NCT01344005. Registered on 27 April 2011.http://link.springer.com/article/10.1186/s13063-018-2803-4Feasibility studiesLung neoplasmsPatient preferencePrimary healthcareQualitative researchQuality of life |