What does it mean to diagnose and live with cancer risk?

By Elspeth Davies

In the past, people only became patients when they felt unwell and visited their doctor in search of remedies. In recent decades, a shift towards prevention in the UK’s National Health Service (NHS) has meant that people can become patients on the basis of their future risk of disease, rather than only their current suffering. My research studies this shift towards risk diagnosis through a focus on one particular case study: the capsule sponge test.

The capsule sponge test is a new technology that is currently undergoing trials in the NHS. It might be used in the future to screen people for a condition called Barrett’s oesophagus, which is sometimes referred to as a precancer or risk factor for oesophageal cancer, cancer of the food pipe. Those diagnosed are offered regular checkups using endoscopies – small cameras used to examine the inside of the food pipe – with the aim of preventing further abnormal changes. Barrett’s oesophagus is not harmful in its current state; it is diagnosed because of its likelihood of becoming cancerous in the future. Because of this, it is a good example of a broader shift towards risk-centred care that has occurred in the NHS (and elsewhere) in recent years.

This project was born in the first weeks of my PhD research in 2020 when I met the researcher who had been developing the capsule sponge test for the past two decades. Chatting over tea and cake at a social event, she told me about the trial that was about to begin, which studied how the test might be implemented in the NHS using a mobile clinic. I was interested in the desire to diagnose cancer risk conditions, and so leapt at the chance to work with her team.

Amidst the covid-19 pandemic and ongoing staffing and resources issues, this was a particularly interesting time to be studying the changing healthcare provided in the NHS. Using the capsule sponge test as a case study, the recently published paper explores some of the social and ethical issues surrounding this shift towards risk diagnosis in this context.

This article highlights a tension between the conflicting aims that people held for the capsule sponge test. Some actors understood its primary purpose as screening for Barrett’s oesophagus, determining those at an increased risk of oesophageal cancer in the process. For others, the test was not only important for diagnosing Barrett’s but also offering reassuring negative results to those who did not have the condition. At times, this created disagreements regarding who should be eligible to undergo the test – only those most at risk of oesophageal cancer or also those who were less statistically at risk but still in need of reassurance.

A third aim also materialised amongst patients who hoped that the capsule sponge test would alleviate their symptoms of acid reflux, which causes Barrett’s oesophagus. For many professionals involved, these symptoms acted as a risk factor used to stratify those most at risk of the condition. The test itself did not improve these painful bodily sensations, sometimes to the disappointment of patients. These debates raised questions about patient and participation, and the extent to which non-professionals should be able to define the aims of medical interventions themselves.

The paper also explores the care that is offered to people after they are diagnosed with Barrett’s oesophagus. The provision of endoscopic surveillance can be reassuring to some patients, but does not always adequately manage their fear about future cancers, which for some can be debilitating, at least initially. High levels of worry are, at least in part, fuelling the growth of large online support groups for people with Barrett’s.

It is notable that the experiences of people living with Barrett’s oesophagus are in some ways similar to those living with genetic cancer risk conditions, such as BRCA. Nevertheless, there are significant differences in the care offered to people diagnosed with each in the NHS, with no equivalent of specialist genetic counselling offered to people living with morphological risk conditions. It seems that this is perhaps an oversight.

The article concludes by making suggestions for future improvements. At its core, it asks: what does it mean to diagnose and live with cancer risk? And how do we care for people who are not ill, but who are at risk of becoming ill in the future? Particularly in the context of a healthcare system widely deemed to be in crisis, the answers are far from simple.

Paper title:

‘This has given me the peace of mind I needed’: Ethnographic Insights into Barrett’s Oesophagus Screening Using the Capsule Sponge Test

Author: Elspeth Davies

Affiliations: University of Cambridge

Competing interests: None

Social media accounts of post author: @elspeth243 on Twitter (X)

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