This novel qualitative study explored scan experiences and scanxiety in people with advanced cancer who have regular scans that determine treatment and prognosis. The principal findings were that scans and associated discomfort and anxiety were accepted as a normal and unavoidable part of cancer care. Scanxiety was often associated with scan results rather than the scan itself and had psycho-cognitive effects on participants. The scanxiety experience was individual; even when participants reported similar symptoms or being at a similar part of their cancer journey, they had different reactions to their scans over time. Participants developed adaptive coping strategies around a scan, and there were differences in how family and friends were viewed as supports.
The normalcy of scans and scanxiety was apparent by the fact that negative experiences around a scan were not always recognised as scanxiety, and coping strategies were not recognised as coping strategies for scanxiety. Further, while scanxiety may be an expected and normal occurrence, it was evident that participants experienced scanxiety in different ways and with different severity. In the larger cross-sectional survey (n = 222), from which participants were drawn, 55% of people with advanced cancer self-reported scanxiety, with a mean severity score of 6 out of 10 on the distress thermometer (possible range 0–10) (Bui, under review). The lack of recognition of scanxiety in some participants raises the possibility it may have been underreported, and that increased awareness and education about scanxiety is needed.
There were no identified formal or systematic approaches to reduce scanxiety in our interviewed participants, with most coping strategies self-derived by participants. Interventions to reduce scanxiety in people with advanced cancer does remain an area of interest, with none of the 10 intervention studies identified from the systematic scoping review focused on this population (Bui, under review). Given the individualised experiences of our participants, there may be benefit to tailored interventions addressing psychological manifestations of scanxiety through psycho-therapeutic or educational interventions, or participant comfort during scan procedures by streamlining cannulation procedures. Given the increased in reported scanxiety in the lead-up to scan results, the impact of scanxiety may also be reduced through systematic changes to delivering results, such as streamlined scan and follow-up scheduling to reduce the wait for results. Discussing the possible scan results and their implications before the scan may also be helpful. The strength of the doctor-patient relationship and the supportive role of family and friends could be incorporated into interventions to improve their efficacy.
Scanxiety can be viewed within the transactional theory of stress and coping proposed by Lazarus and Folkman, where scanxiety becomes a product of an individual and their environment (Fig. 1). Primary appraisal occurs when individuals consider whether a scan is a threat, contemplating understanding of their cancer and previous experiences with scans. Secondary appraisal occurs when individuals consider aspects around the scan experience and their ability to navigate these problems. In the feedback loop between primary and secondary appraisal, scanxiety levels can increase and decrease. Re-appraisal of the scan as a threat may occur through a scan period, or between scan periods.'
The main strength of this study is the detailed information obtained about scanxiety in people with advanced cancer, an understudied population. As recognised by participants, scans are a necessary means to assess the progress of cancer and response to treatment. Therefore, the issues raised around the scan experience and scanxiety in this study are likely to resonate with many people with advanced cancer, with practice implications for members of the multidisciplinary teams providing cancer care. The adaptation of scanxiety to the threat appraisal model provides an understanding of the factors contributing to scanxiety, and could guide potential intervention to reduce scanxiety.
The limitations of this study relate to its generalisability. We recruited a small sample size of participants who were English-speaking, had CT scans for monitoring of their cancer, had good relationships with their doctors, and who mostly had been living with advanced cancer for more than two years. These characteristics may not be typical of the general population of people with advanced cancer. The majority of interviewees also did not report high levels of scanxiety, which was discordant with the quantitative scanxiety assessment in the partner survey study. The qualitative nature of our study also limits the generalisability of our results, while the cross-sectional methodology introduced recall bias. It is unclear whether scans and associated scanxiety caused intrusive thoughts or behaviours in participants’ lives.
Prospective longitudinal research on scanxiety in people with advanced cancer is currently underway, and is important in quantifying the prevalence and severity of scanxiety to properly define the scope of this problem and to inform the optimal timing of scanxiety interventions.