Discussion
In this study we used qualitative methods to investigate the opinions of LCS-eligible individuals and HCPs involved in the care of patients with lung cancer, focusing on the key features of lung screening, and in particular, the benefits and harms. These findings can enhance the development of information materials that may be acceptable to a broad range of individuals and be targeted to address the concerns highlighted. We found people at risk of lung cancer generally perceived it as an incurable and frightening condition, and smokers were particularly fatalistic. Despite this we found a persistent ‘belief in screening’, and appetite for information, with many participants expressing a ‘right’ to be fully informed, but others cautioning against too much information. False positives and false negatives were the harms that generated the most concern, but most participants were not deterred from screening.
Our finding that participants were generally unaware of curative treatment and thought it to be an incurable condition, is supported by previous studies that have shown fear, worry and fatalism about lung cancer21–23 as well as poor perceived benefit from LCS particularly among current smokers.21 24 A few participants were aware of positive outcomes in lung cancer, which may increase as more patients undergo curative treatment, but this finding demonstrates the need to provide information about curative treatment following LCS.
Our finding that participants and HCPs held a belief in screening as something that saves lives and expressed trust in medicine are supported in the literature.25 26 Thornton et al,26 reported that medical imaging is perceived as highly beneficial, though some contrasting studies have reported a variety of levels of trust of medical systems.27 28 In the face of this overriding trust in screening, we found a degree of disregard of the harms as either uncommon or insignificant, thus suggesting that providing information about the harms is unlikely to deter most individuals from LCS. This is supported by findings in two studies. One which demonstrated that individuals placed greater importance on LCS benefits than harms, particularly with respect to decision-making;29 and another UK based survey study reported that smokers welcomed the idea of LCS in principle.30
Participants had varying information preferences, with many feeling they had a ‘right’ to know and to make an informed decision, a finding that is supported by previous studies.6 16 31 Generally, it was accepted that policy makers should decide who screening should be offered to, and that the decision to participate should ideally be made by individuals with support from a medical professional if required. Other studies have similarly reported that autonomous decision-making with expert guidance is preferable.32 33 On the other hand, some participants were cynical or overwhelmed by ‘too much information’ and this variability in preferences makes designing decision literature and aids challenging. People have been shown to prefer personalised decision aids,6 and the limitations in literacy found in the at-risk population will make this even more important. For the core information materials we therefore propose that they should not be overly burdensome, with signposting to more detailed information.
Our finding that participants wanted to know about the potential harms of screening, even though these would be unlikely to deter them from participating, emphasises the importance of including these in information materials, consistent with other screening contexts.5 False negatives appeared to be of greater concern than false positives (in contrast to one other study34) and some people found additional investigations reassuring. Those who had encountered false positives and negatives were generally more concerned, suggesting that the hypothetical scenarios presented may understate people’s true reactions. These findings are very useful to inform the emphasis placed on the content of information; with the caveat that individuals do not feel reliant on further testing for reassurance when this is not advised clinically.
Awareness of overdiagnosis was low and the concept challenging to explain. However, most did not find this worrisome, either because they valued cancer treatment in spite of this issue or because they could opt for expectant management. Similar findings have been reported with respect to overdiagnosis in mammography screening.16 Radiation risk was poorly understood, although not a major deterrent. This is supported by a study investigating patients’ views on tests with ionising radiation, where many wanted to be made aware of the potential harms, however uncertain, while others found the uncertainty disconcerting and unhelpful.26
Anxiety as a result of indeterminate results, such as pulmonary nodules, was a concern for some participants which is supported by previous studies suggesting uncertainty associated with indeterminate nodules can weigh heavily on patients.35 However, many participants were reassured by the prospect of interval scanning and felt that psychological distress could be reduced by education around the low subsequent risk of developing cancer in the context of indeterminate pulmonary nodules. Studies have found individual differences in tolerance of uncertainty, that can affect how people weigh up benefits and risks, and that communication which effectively prepares patients for this likelihood, may mitigate poor tolerance of uncertainty36 and distress associated with pulmonary nodules.37 38
Strengths and limitations
Selection bias is possible despite our attempts to mitigate this by purposively sampling varying educational and ethnic backgrounds. Despite this, it is likely that certain viewpoints may have been missed or under-represented or over-represented. HCPs were also included in the study design to provide insights that may have been missed by selection bias, and their data have significantly contributed to the structure and relative importance of the themes. Focus group participants discussed screening in the hypothetical sense and the fact that screening intentions are recognised to potentially differ from actual screening behaviours39 should be considered in the overall interpretation. Finally, the interviewer, who has a background in LCS and is an HCP, may have unintentionally biased the elicited data despite attempts to circumvent this (such as not disclosing her background, knowledge or any personal bias to the participants).
The strengths of the study include the wide range of demographic and educational backgrounds of participants. They were invited by a primary care database search in a similar way to what might occur in the setting of national LCS implementation, and almost all the participants would qualify for LCS if offered according to the USPSTF recommendations. Furthermore, the lack of availability and public knowledge in the UK for LCS has enabled recruitment of a group of individuals with no prior knowledge of LCS and pre-existing external biases. The findings from this study have helped inform the content and format of an information film designed to promote informed decision-making in LCS-eligible individuals, and has been subsequently tested as a nested randomised study within the Lung Screen Uptake Trial.9 The film is available to view via the Roy Castle Lung Cancer Foundation website (https://www.roycastle.org/lungcancerscreeningguide).