Introduction by Dr Samantha Quaife, BSc, MSc, OhD, CPsychol
Informed choice is a globally recognised ethical standard across healthcare. People who make informed choices about their health are more than just informed; they are more engaged, report better experiences, and are less likely to regret their choice. Everyone who could benefit from lung cancer screening should have access to balanced and accurate information that helps them to make an informed choice about whether they participate. There are risks of screening to understand, as well as benefits, which individuals will value differently in light of their personal circumstances and preferences and choosing not to be screened is a legitimate choice that should be respected.
In practice, however, this information can be complex and challenging to communicate effectively. Information about lung cancer can evoke emotional responses that reduce how receptive people are, while information about risk can feel uncertain and ambiguous. We all have different needs and preferences for the type, amount and format of information that best supports our understanding. However, when communicated in the right way, lung cancer screening information will help to empower individuals to make the right choice for them, and concerns about deterring people from participating become unfounded.
There is no one size fits all approach and research continues to seek effective, equitable and person-centred approaches to supporting informed choice. But this is a rapidly evolving area with many tools available to use. The GLCC has collated a growing range of these resources designed by various organisations to support individuals who are considering attending lung cancer screening. When selecting or adapting these resources for use in your local context, we encourage you to think carefully about the needs of your local population and the considerations below.
Going beyond information giving
Providing accessible lung cancer screening information is fundamental to supporting informed choice, but it is not always enough. Relying solely on standalone written information and individual-based approaches to decision-making can introduce inequalities, by disadvantaging those who find the information difficult to engage with, hard to understand or emotionally overwhelming. Individuals considering lung cancer screening should have the opportunity to share their decision-making in partnership with an appropriately trained professional who helps them interpret screening information in line with their values, preferences, and goals. This shared approach to decision-making can also help when the information is potentially worrying because any concerns or questions can be discussed immediately. It also allows the professional to check understanding. The professional should advocate in the interests of the individual’s health using their expertise but also ensure they support and respect the individual’s autonomy to decline screening.
However, the extent to which each individual will want to be involved in this decision will vary. Some will appreciate an equal role, but others will prefer to make up their mind alone or wish to delegate the decision entirely to a health professional. Using hybrid, flexible approaches to decision-making which accommodate individual preferences for their role and involvement has been shown to improve screening participation and the quality of decisions.
Distributing decision support across the screening pathway
Achieving informed choice for lung cancer screening often involves interactions at different communication touchpoints throughout the screening pathway, which can be dispersed across the screening professional team. In particular, first line information that is provided with the screening invitation has a dual purpose. It needs to be appropriately engaging to support equitable participation, as well as give the amount of information proportionate to decision-making at that stage. This may only be whether to consider the screening offer, rather than make a decision about actually having screening. Subsequent information should support informed choice about participating in screening and prepare those choosing screening for the different potential benefits, harms, and outcomes, including the possibility of further surveillance and need for further tests and diagnostic work-up.
Informed choice also occurs cyclically. Individuals are invited to participate at regular (e.g. yearly) intervals, at which point they may have reason to reconsider their decision to participate or may continue screening without deliberation. They will also, at some point, become ineligible for lung cancer screening, which requires careful communication to avoid over-reassurance about their future risk of lung cancer.
Social and emotional context
Like most choices in life, we do not make cancer screening decisions in a vacuum. Our experiences, attitudes and emotions all affect how we interpret and react to screening information, as well as how much attention and priority we give to it. This is important to understand in the context of lung cancer screening because perceptions of lung cancer in the community are largely negative and often fearful, which can undermine the perceived value of early detection. Fatalistic perceptions of lung cancer are most common within communities experiencing socioeconomic deprivation and long-term tobacco dependence, who disproportionately suffer the highest incidence of the disease. There is also a mismatch between lay and medical understanding of eligibility. The same two characteristics that drive eligibility for lung screening – older age and longer smoker duration – are often seen to contraindicate benefit, meaning those at greatest risk may discount themselves from benefitting. These perceptions are of course understandable; given that most diagnoses are made at an advanced stage and the overwhelmingly lay experience is therefore that of poor prognosis. Relatedly, this experience instils low confidence in the efficacy of curative treatment for lung cancer and its tolerability, seen only to prolong short-term survival. In addition, in countries and cultures where tobacco smoking is stigmatised, lung cancer is too by association, with deeply ingrained narratives of personal responsibility that lead to self-blame and avoidance of care.
Crucially, these negative perceptions of lung cancer are reducing receptivity to, and engagement with, lung cancer screening information among those at high risk. Improving public perceptions of outcomes for lung cancer and emphasising a non-judgemental, supportive programme is crucial to help change the public narrative and to improve confidence in the efficacy of a screening programme.
Available decision support tools: effectiveness and challenges
Many of the available resources designed to support individuals and health professionals in sharing decision-making about lung cancer screening have been shown to be acceptable, reduce how conflicted individuals feel about their choice, and improve overall knowledge of screening. However, very few studies of decision support tools have included socioeconomically or ethnically diverse populations, and the type of content they include, and presentation techniques, vary widely. While overall knowledge scores are often improved, there are particular aspects of screening which are more poorly understood and warrant greater attention. These include the basis of eligibility for lung cancer screening, which can be misinterpreted as beneficial for those at relatively lower risk (i.e., younger adults with a limited smoking history) or those who have respiratory symptoms. The size of the risk reduction in lung cancer mortality offered by screening can also be misunderstood; typically presented solely in relative terms making it difficult to understand the absolute chance of benefit. A further difficulty is understanding those harms of screening that are less familiar and seem counterintuitive, such as false negative results and overdiagnosis, as well as the different types of possible abnormal results; specifically incidental and indeterminate results.
Communicating the size and likelihood of the different benefits, risks and outcomes of lung cancer screening is also challenging. Information about risk is inherently difficult to communicate because it is, by its very nature, uncertain. Uncertainty can make information seem ambiguous which in turn can lead individuals to distrust the information or make choices based on their emotional response, particularly those who have lower levels of numeracy. In lung cancer screening, the frequency and size of the potential risks and benefits are based on population estimates, making their application to each individual considering screening even more difficult to communicate. However, there is a huge field of risk communication evidence about the best way to present this information, including principles like ensuring denominators are consistent, using absolute numbers or natural frequencies (e.g., 1 in 100), and including simple visual displays that engage attention and support understanding (e.g., icon arrays). Many of the available decision support tools use these techniques but this is variable across tools.
Stakeholder-informed design and quality assurance
It is of course fundamental that information resources for lung cancer screening follow best practice principles for supporting comprehension and engagement with health information. This includes, for example, using plain language suited to the reading age of the intended population and following minimum quality assurance guidelines for health information, decision support tools, and decision aids (e.g., the International Patient Decision Aid Standards). However, it is also important to involve stakeholders from the target population and local communities to understand their information needs and preferences from the outset, when choosing, adapting, or designing information resources from scratch. This is particularly important given the paucity of research developing decision support tools within diverse communities, to ensure they are equitable and culturally appropriate. Incorporating user-testing before implementing the chosen, adapted or developed resource allows the known challenges in communication (such as those outlined above) to be examined to ensure they are appropriately addressed or whether adaptations in content or presentation are needed. Ultimately and where possible, the subsequent impact of informed choice strategies and information resources should be evaluated, and informed choice assessed as part of lung cancer screening participation metrics.
Download the GLCC lung cancer screening resource Excel spreadsheet via this link:
