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Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study

Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study
Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study

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.

Feasibility studies, Lung neoplasms, Patient preference, Primary healthcare, Qualitative research, Quality of life, Random allocation, Referral and consultation, Smoking, X-rays
1745-6215
Prout, Hayley C.
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Barham, Allan
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Bongard, Emily
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Tudor-Edwards, Rhiannon
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Griffiths, Gareth
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Hamilton, Willie
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Harrop, Emily
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Hood, Kerry
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Hurt, Chris N.
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Nelson, Rosie
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Porter, Catherine
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Roberts, Kirsty
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Rogers, Trevor
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Thomas-Jones, Emma
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Tod, Angela
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Yeo, Seow Tien
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Neal, Richard D.
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Nelson, Annmarie
9be17968-fda0-4bd8-94cd-96d772f5083c
Prout, Hayley C.
102656cf-4207-4752-af0c-58e08dfec39b
Barham, Allan
3e7d89d0-e50a-4a8c-bb13-0c64b0886745
Bongard, Emily
498cda67-5b1a-4f3a-98f1-9c2b01c48410
Tudor-Edwards, Rhiannon
1ea500fc-6451-4eed-86da-f3923ef5b334
Griffiths, Gareth
7fd300c0-d279-4ff6-842d-aa1f2b9b864d
Hamilton, Willie
3536902a-7b5f-4f8f-aa4a-ea3c10903609
Harrop, Emily
01114a0a-f1c8-4d71-aaff-c50365561ddd
Hood, Kerry
79d7555b-fcdd-4fe1-8344-cd9859c7cbed
Hurt, Chris N.
bf8b37a0-8f08-4b47-b3f3-6fc65f7ab87f
Nelson, Rosie
29bec096-a614-4679-8d2d-31aa2247f59e
Porter, Catherine
ef613b84-8751-449e-9c7d-28170aac0018
Roberts, Kirsty
567bcf1c-c441-4e96-af39-c49ccab64e80
Rogers, Trevor
154b4ff6-2211-4ab3-9597-1f747fa4a883
Thomas-Jones, Emma
ea15d5ac-8232-4823-ab40-17bec0968520
Tod, Angela
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Yeo, Seow Tien
3e386bd2-e772-4d03-8a5e-faa5c475fe36
Neal, Richard D.
f8289d73-c694-40d0-ac39-ceb4f70d79c6
Nelson, Annmarie
9be17968-fda0-4bd8-94cd-96d772f5083c

Prout, Hayley C., Barham, Allan, Bongard, Emily, Tudor-Edwards, Rhiannon, Griffiths, Gareth, Hamilton, Willie, Harrop, Emily, Hood, Kerry, Hurt, Chris N., Nelson, Rosie, Porter, Catherine, Roberts, Kirsty, Rogers, Trevor, Thomas-Jones, Emma, Tod, Angela, Yeo, Seow Tien, Neal, Richard D. and Nelson, Annmarie (2018) Patient understanding and acceptability of an early lung cancer diagnosis trial: a qualitative study. Trials, 19 (1), [419]. (doi:10.1186/s13063-018-2803-4).

Record type: Article

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.

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Accepted/In Press date: 10 July 2018
e-pub ahead of print date: 4 August 2018
Published date: December 2018
Keywords: Feasibility studies, Lung neoplasms, Patient preference, Primary healthcare, Qualitative research, Quality of life, Random allocation, Referral and consultation, Smoking, X-rays

Identifiers

Local EPrints ID: 424633
URI: http://eprints.soton.ac.uk/id/eprint/424633
ISSN: 1745-6215
PURE UUID: 5596b685-1277-42ce-80e3-4c2a42ec8f67
ORCID for Gareth Griffiths: ORCID iD orcid.org/0000-0002-9579-8021
ORCID for Chris N. Hurt: ORCID iD orcid.org/0000-0003-1206-8355

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Date deposited: 05 Oct 2018 11:39
Last modified: 19 Mar 2024 03:09

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Contributors

Author: Hayley C. Prout
Author: Allan Barham
Author: Emily Bongard
Author: Rhiannon Tudor-Edwards
Author: Willie Hamilton
Author: Emily Harrop
Author: Kerry Hood
Author: Chris N. Hurt ORCID iD
Author: Rosie Nelson
Author: Catherine Porter
Author: Kirsty Roberts
Author: Trevor Rogers
Author: Emma Thomas-Jones
Author: Angela Tod
Author: Seow Tien Yeo
Author: Richard D. Neal
Author: Annmarie Nelson

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