Scanxiety

Why scanxiety studies used so many different tools

The first scoping review of scanxiety searched seven databases up to July 2020, screened 26,693 citations and included 57 studies. Nearly half concerned mammography, a quarter positron-emission tomography and a quarter computed tomography, and four in five were observational rather than trials of an intervention.

Across those 57 studies the reviewers counted 81 distinct measurement tools. Three of them carry forty of the uses between them:

1. a Likert scale designed for the study in hand, in 17 cases
2. the State-Trait Anxiety Inventory, in 14
3. the Hospital Anxiety and Depression Scale, in 9

The rest were one-offs.

The consequence is a prevalence range that cannot be read. Where studies set a threshold in advance, scanxiety was reported in between 0 and 64 per cent of patients. Where they counted any anxiety at all, the range was 13 to 83 per cent. The reviewers' own conclusion is that the variation is likely due to heterogeneous methods of measurement and that a uniform approach would be needed before the phenomenon can be understood.

How rarely the literature defines scanxiety

A second scoping review, published two years later, screened 6,820 titles and abstracts, read 152 full texts and settled on 36 articles about adults with a current or previous cancer diagnosis. In five of those 36, the authors explicitly defined scanxiety.

Seventeen of the articles used symptom measures that actually referred to cancer scans. Twenty-four used general anxiety measures with no reference to a scan at all, which means a substantial part of the literature on scanxiety is measuring anxiety and calling it scanxiety because the participants happened to be having scans.

Why waiting for scan results is the worst part

Where the second review found agreement was on structure. Scanxiety has at least two components: the procedure, which brings Claustrophobia and physical discomfort, and the result, which brings the implications for disease status and treatment. The reviewers note that these may need different interventions.

And the period singled out as particularly stressful is neither of those. It is the interval between having the scan and being told what it showed.

That is a striking gap. The distress is located in an administrative delay, and almost every instrument in use asks about a state rather than a period. Nine of the twenty studies that measured anxiety before and after a scan found a significant drop afterwards, which is consistent with the waiting being the object rather than the machine.

What makes scanxiety more likely

The 2021 review found consistent correlations with:

• lower education
• smoking
• higher levels of pain
• a higher perceived risk of cancer
• having a diagnostic scan rather than a screening one

It found no consistent association with age, gender, ethnicity or marital status.

The perceived-risk finding is the one to hold on to, because it is the only one that is about a belief rather than a circumstance, and it is the one an intervention could reach.

Severity, meanwhile, was low in almost every quantitative measure, in 54 of the 62 that reported it. Studies using descriptive measures put moderate to severe scanxiety at between 4 and 28 per cent. A common mild distress with an uncommon severe tail is a different clinical problem from a widespread severe one, and the headline prevalence figures do not distinguish them.

Why scanxiety has a literature but no diagnosis

Scanxiety is a portmanteau of scan and anxiety and its recorded uses are recent. Lori Hope used it in a 2011 book about what people with cancer want others to know, describing a scanxiety attack nine years after being declared cured. Jai Pausch used it in 2012 for the nervous feeling that comes with the approach of a scan date. A newspaper report in 2014 quotes a woman on the strain of going through it every six months.

It appears in no diagnostic manual and it does not need to. What it names is a predictable reaction to a specific and repeated procedure, and by 2024 it was being studied against fear of recurrence for shared mechanisms in young adult women who had had breast or gynaecological cancer.

The population is not small. Around 65 per cent of adults diagnosed with cancer in developed countries are expected to live at least five years. About 17 million people in the United States, one in twenty, are being treated for cancer or have been, up from 11 million in 2009, and roughly 45 million people worldwide have survived at least five years. Follow-up imaging is the standard of care for most of them, which makes the interval between the scan and the result a recurring appointment in a very large number of lives.