Experiences with scans and scanxiety in people with advanced cancer: a qualitative study

Scan-associated anxiety (‘scanxiety’) in people with advanced cancer is a common clinical problem. This study aims to explore the experiences of scans and scanxiety in people with advanced cancer, including their strategies to reduce scanxiety. Semi-structured qualitative interviews were conducted with people with advanced cancers who had a computed tomography scan for monitoring of their cancer. Data was analysed with an interpretivist approach using framework analysis. Interviews with 16 participants identified three key themes: the scan experience, the scanxiety experience and coping with scans. Scans were viewed as a routine and normal part of cancer care. Scanxiety was experienced differently by each person. Scanxiety often related to the scan result rather than the scan and led to psycho-cognitive manifestations. Adaptive coping strategies were often self-derived. People with advanced cancer experience scanxiety, but often accept scanxiety as a normal part of the cancer process. The findings fit within a transactional model of stress and coping, which influences the level of scanxiety for each individual. Quantitative research to determine the scope of scanxiety will be useful to develop formal approaches to reduce scanxiety.


Introduction
Distress leading up to, during and after an imaging scan has been termed 'scanxiety' [1]. While scans are performed regularly in cancer care, the scanxiety experience is likely to be different in people having scans for different reasons. People with advanced cancer, who often have regular scans to monitor their cancer, face a condition that is often incurable. Treatment resistance develops almost universally, though uncertainty about prognosis is created by emerging longerterm data about novel anticancer treatments such as immunotherapy and targeted treatment. Scan experiences may be negatively impacted by symptoms from cancer or side effects from treatment. Additionally, scan results provide an objective assessment of cancer that can prompt treatment changes and modify expectations about prognosis. People with advanced cancer are living longer and have more scans for monitoring over their cancer trajectory, but research on scan experiences and scanxiety in this population is limited.
Qualitative studies on the scan experience have included people having scans for cancer screening, surveillance, staging or diagnosis [2][3][4][5][6]. In these studies, participants described anxiety and discomfort around the time of the scan related to scan procedures, waiting for scan results, uncertainty and fear of cancer recurrence. In a recent systematic scoping review on the quantitative assessment of scanxiety in people having cancer-related scans, only three of 57 studies focused specifically on people having scans for monitoring of cancer. Overall, scanxiety prevalence ranged from 0 to 83%, and scanxiety severity varied due to heterogeneity in study design and scanxiety measurement [7].
We conducted a qualitative study to determine the lived experiences of people with advanced cancer having scans for cancer monitoring. The aims of this study were to explore the experiences of scanxiety and strategies used to manage scanxiety.

Study design and participants
We conducted semi-structured interviews as a sub-study of a multicentre cross-sectional survey of scanxiety. Participants eligible for the survey were consenting, English-speaking adults who had an advanced solid cancer and a computed tomography (CT) scan for cancer monitoring within the previous four months. Participants were excluded if they had only completed CT scans for the initial diagnosis or staging of cancer.
Participants who completed the survey at a single institution (Concord Repatriation General Hospital, CRGH) could opt into further research. Once the interview sub-study obtained ethical approval, a list of interested participants was generated. Treating oncologists confirmed it was appropriate to contact participants for the sub-study. Interviewees were recruited via a convenience sampling strategy, where participants were invited by telephone or email based on the proximity of their next date of attendance to the cancer service.
Interviews were planned to take up to 60 min and were conducted by one author (KTB) in person or via telephone. Participant interviews continued until saturation of themes was reached. The study was approved by the Sydney Local Health District Human Research Ethics Committee -CRGH (2019/ETH8007).

Data collection
Interviews were guided by a semi-structured schedule (Supplementary 1). Topics included the following: initial exploration of cancer diagnosis and treatment, how participants experienced scans in terms of procedural components of the scan and of obtaining results, how participants experienced scans in terms of the psychological impact, how scanxiety may have changed over time, any functional impact of scanxiety and coping strategies and participant recommendations to manage scanxiety. Participant details such as their age, sex, cancer type, time since diagnosis and current treatment were recorded. All interviews were audio-recorded and transcribed verbatim. Interviews and transcripts were reviewed in real time and feedback provided on interview technique and adaptation of the interview schedule.

Data analysis
The interviews were analysed following an interpretivist approach [8] and using the five steps of framework analysis [9,10]: familiarisation; constructing a thematic framework; indexing; charting; and mapping and interpretation. It involved simultaneous data collection and analysis and systematic review and refinement of developing categories of data. The thematic framework was developed iteratively through collaboration within the research team, which included medical oncologists and a behavioural scientist experienced in qualitative psychosocial research. Doublecoding on 10-20% of transcripts was performed independently by two members of the research team to ensure consistency of findings and validity of themes. The data was summarised into a matrix in Microsoft Excel and was organised by participant and themes.
Methodological rigor was ensured by the following: creation of analytical memos by the interviewers and the transcript reviewers; transcription review by at least two researchers; verbal debriefing within the research team; multiple and cross-coding; iterative revision of the interview guide and categories of data; and member checking with participants naïve to the interview.

Results
Sixty-nine of 96 survey participants volunteered to be contacted about the interview sub-study. At the time of interview recruitment, 15 people were too unwell to participate. Contact was attempted for 30 people, of whom 20 agreed to be interviewed, one person declined without providing a reason and nine people were uncontactable. Data saturation was achieved after 16 interviews were completed.
In total, 16 people with advanced cancer participated in this study between October and December 2019 ( Table 1). The age range was 46 to 82 years, with seven men and nine women. Most were diagnosed with advanced cancer more than 2 years ago (n = 11). Participants had a range of primary cancer types and were receiving a variety of treatments, with four participants not on active treatment.
The median interview duration was 20 min (range 6 to 31). Three major themes were identified: the scan experience, the scanxiety experience and coping with scans. Tables 2, 3, 4 and 5 provide exemplar quotations in relation to these themes.

A routine part of cancer care
Scans were considered a routine part of cancer management and were considered 'part of the process' and a 'necessary evil'. One participant stated they were 'up to scan 544 or something' (P14), with the hyperbole of the number of scans reflecting the frequency of regular scans for people living with advanced cancer. Participants described individualised routines around the time of a scan and demonstrated variability in their focus on the different aspects of the experience ( Table 2). Problems with contrast and intravenous cannulation were recurring issues, but often accepted as an unavoidable part of the scan. Participants preferred using their central lines for intravenous access where possible to avoid '…pricking and prodding trying to find [the vein]' (P04). One participant (P16) had 'horrific' scan experiences due to treatment side effects of tremors and muscle cramps in combination with the required positioning during the scan.
The process of receiving results was considered part of the routine, with participants generally expecting and preferring to receive their results at their next face-to-face oncology appointment, so they would 'get a better reaction… [and] see how concerned [their doctor] is' (P12). Few participants were open to receiving their results by phone or email, though it was preferred if it could shorten the period waiting for the scan and thus shorten the period of anxiety. There was variability in preferences for receiving scan results via verbal report, physical hardcopy and/or by viewing the images on a computer screen.

Interactions with the clinical team (Table 3)
All participants reported trust in their oncologists' expertise, noting that scan results required medical interpretation. They described the clinical team in positive terms  and had developed meaningful professional relationships with them. One participant favourably recounted working as a team with his radiographer to improve his scan experience, which included an effective handover between radiographers when the personnel changed (P16). Participants valued effective communication from their doctors and effective communication between their doctors, which they felt was sometimes lacking. When negative interactions with the clinical team occurred, they were recalled by participants' years after the event.
Theme 2: the scanxiety experience (Table 4) The experience of scanxiety varied, reported by some participants and not others, often with a psychological impact, sometimes generating physical symptoms, and with differing triggers.

Presence of scanxiety
Most described the scan itself as 'alright', 'fine', 'okay', 'not a problem' or 'pretty easy', though some participants did experience scanxiety in relation to specific steps in the procedure: 'The worst part is going, oh god, I hope they can find the vein' (P05). For most participants, the scan result appeared to be the main driver of scanxiety. Scanxiety was also described when there was a deviation in the expected process: 'If someone calls you [with the result], it makes you nervous' (P13).

Manifestations of scanxiety
Participants described intrusive thoughts about scan results and their future, changes in mood such as irritability, impaired concentration and reduced motivation to complete usual activities. They also experienced physical symptoms of insomnia, fatigue and nausea.

Knowledge and uncertainty influences scanxiety
Participants recognised and welcomed the concrete assessment of their cancer provided by scans. Scans were understood to have implications for treatment decisions and prognosis: 'It puts me in a position where I can make decisions going forward' (P02), which triggered uncertainty and scanxiety, particularly when participants felt unwell or treatment was not controlling the cancer. Familiarity with scan procedures did reduce scanxiety, especially as participants learnt how to improve the experience. Despite this, additional upfront information about scan procedures was not thought to help: 'They probably tell you the process, but it hasn't sunk in yet because it's the first thing' (P13). The context of the scan and individual belief systems also influenced scanxiety, though in a variable way. For the initial scan, one participant had more scanxiety because the diagnosis had not been made, while another felt less anxious because he did not know what was ahead of him in terms of the diagnosis and treatment. For participants who initially received potentially curative treatment before transitioning to a palliative intent of care, one participant reported more scanxiety early on when 'a lot rode on those scans' (P14), while another felt more scanxiety later on: 'I was very brave at the beginning. But as the time and the experiences have accumulated, it's almost like cumulative trauma… [the cancer is] ongoing in your life [and] you lose hope' (P11).

Timing of scanxiety
The onset and peak of scanxiety varied among participants. Some reported onset a few days before the scan (P10), a few weeks before the scan (P11) or during the scan itself Participants often found the period between the scan and receiving their results the most difficult: 'having the scan to the result bothers me terribly' (P03); 'waiting for the result is the most nerve-racking' (P13). Some perceived this period to be a clear contributor to scanxiety and preferred receiving scan results 'within the hour, but I know that's impossible' (P11). Others were casual about the timing between the scan and receiving the result, accepting that 'usually about a week [is] probably about right' (P10) or that 'one or two weeks… [is] fine' (P13). The day of the appointment for the result was sometimes associated with a peak in scanxiety: 'The worst part is waiting in the room to get my result' (P03); for another, it calmed him: 'you know you're getting the result. You know that it's coming… It puts my mind at ease' (P14).

Theme 3: coping with scans
Participants employed a range of strategies to improve their scan experiences, though these were not uniformly described or recognised as ways to reduce scanxiety.

Behaviours and attitudes around the time of a scan (Table 5)
Participants engaged in specific behaviours around the time of the scan, including normalisation, distraction, relaxation, taking ownership over their health care, positive self-talk and seeking professional help. Some negative health behaviours, such as excessive alcohol consumption, manifest in participant reports. Anti-anxiolytic medications, when used, were considered helpful (P02, P16), though other participants reported feeling 'dopey' (P14), were concerned about 'being drugged up' (P11), or 'just [didn't] think it's necessary' (P03). These strategies were often used in the lead up to the scan or while waiting for the result, rather than during the scan itself. The one exception was a participant who stated, 'I closed my eyes through the whole thing' (P16). Participants also described their inherent approach to life and to their cancer which helped them manage around the time of a scan.
The role of support networks (Table 6) Most participants had a clear preference on whether they wanted family or friends to be present while they received scan results. Some wanted to be alone, feeling that family or friends would be anxious and require support themselves rather than supporting the participants. Others preferred the moral support and assistance retaining and understanding information.
Family and friends also provided support through logistics, positive encouragement, empathy and by being a confidante. The lack of support was also noted: 'Others would kind of say, "oh, you'll be alright"… There's a voice in my head that says, "you don't know the half of it!"' (P10). Family and friends were also observed to experience scanxiety: '[My family are] probably more anxious about the appointment coming up than I am' (P12). Participants did not always recognise that scanxiety was experienced by others: 'It didn't occur to me that it happened to anyone else. I thought it was just me being me' (P03); however, they were generally not interested in external supports: '[The person from the Cancer Council] said sometimes some of the members [of the support group] won't be there because they've died. And I said, no, that's just not for me… I don't want to sit around with people and talk about, oh mine's worse than yours' (P03).

Discussion
This novel qualitative study explored scan experiences and scanxiety in people with advanced cancer, a population who are living longer with cancer and who have regular scans that can profoundly affect 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. People with advanced cancer may accept these negative experiences because of the higher stakes involved, where scans provide an objective assessment of their cancer and can direct optimal care to improve prognosis. Further, while scanxiety may be an expected 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 remains an area of interest, with none of the 10 intervention studies identified from the systematic scoping review focused on this population [7]. 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 procedures for intravenous cannulation (especially as people with advanced cancer may be more likely to have a central line). 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 [11], 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. Scans are often the preferred method of objectively assessing cancer and are a common thread across cancers and treatments. The burden of scans is likely to increase as people with advanced cancer liver longer, and therefore the issues raised around the scan experience and scanxiety in this study are likely to resonate with many people. The practice implications for members of the multidisciplinary teams providing cancer care hence become increasingly relevant. 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 who have characteristics that may not be typical of the general population of people with advanced cancer. They 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 2 years. Our participants were also older, so our findings may be less applicable to younger people who have different circumstances around work, relationships, family and child-rearing, support networks and financial situations. The majority of interviewees also did not report high levels of scanxiety, which contributed to interview durations that were shorter than anticipated, and which was discordant with the quantitative scanxiety assessment

Primary appraisal:
Is the scan a threat?

Secondary appraisal:
Can I cope with the scan?

Re-appraisal
Triggered by reminder about scan or new data scanxiety if scan considered a threat and/or inadequate coping scanxiety if scan not considered a threat, and/or adequate coping Fig. 1 Threat appraisal model of scanxiety 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.

Conclusions
People with advanced cancer do experience scanxiety, but it may be under-described due to the belief that scanxiety is a normal phenomenon. Varying self-derived coping strategies are used around a scan, and formal approaches to reduce scanxiety are needed.