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

Abstract

BackgroundThe 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.MethodsQualitative 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.ResultsThe 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.ConclusionsThe 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 registrationClinicalTrials.gov, NCT01344005. Registered on 27 April 2011.

Lung cancer screening: targeting the hard to reach—a review

“…[2018], reassurance of not having LC is a key motivational factor to participate in LCS (44). This was also seen in the study of Byrne et al…”

“…Their role is so important because the lack of understanding of the information in the patient's perspective could result in no participation. Moreover, many participants relay on their health professional to make the decision for them on whether to undergo screening or not (44).…”

Lung cancer screening implementation: Complexities and priorities

“…96 Qualitative research has consistently identified stigma as a barrier to lung cancer screening uptake in the UK and the US. 38,57,93,97 In addition to acting as a direct barrier to screening uptake, stigma may contribute to misreporting of smoking status to health professionals, commonly seen in smoking cessation clinical trials. 98 This may indirectly contribute to low screening uptake via the very poor accuracy of smoking status recorded in electronic health records, as discussed below, leading to non-identification of high-risk participants.…”

“…Qualitative research has consistently identified stigma as a barrier to lung cancer screening uptake in the UK and the US 38,57,93,97 . In addition to acting as a direct barrier to screening uptake, stigma may contribute to misreporting of smoking status to health professionals, commonly seen in smoking cessation clinical trials 98 .…”

Maximising recruitment of research participants into a general practice based randomised controlled trial concerning lung diagnosis—staff insights from an embedded qualitative study

“…The integrated qualitative study was carried out with the aim of exploring the feasibility of individually randomising patients to an urgent chest X-ray or not and to investigate any barriers to patient recruitment and participation. A previous paper reported on patient experiences of participating in the trial [ 14 ]. This current paper reports on practice staffs’ experiences of participating in the trial.…”