Patients with primary brain tumors expressed a generally positive attitude towards the current neuro-oncological MRI follow-up scheme in this monocentric survey at a tertiary academic center. However, GBCA-free MRI protocols would be preferred, provided their diagnostic non-inferiority. Importantly, patient knowledge about any potential adverse effects of GBCA was rare, and we identified women as less satisfied. At the same time, age, diagnosis and number of previous scans had no impact on satisfaction.
Patients underestimated the number of scans they had undergone, with underestimation being positively correlated with the number of previous scans. Scan burden underestimation can be explained by ‘positivity bias in memory’ - a phenomenon describing a person’s inclination to remember pleasant events more vividly and favorably than unpleasant ones [31, 32]. Patients with 30 scans or more were significantly more satisfied with the number of scan follow-ups than patients with ten scans or fewer. We hypothesize that patients with more scans are more likely to think they are in a stable phase of their disease than patients who only recently got diagnosed. There is a tendency in the medical community to reduce both MRI frequency and protocol duration, scan time. Arguments are costs, waiting lists, and the assumption that patients find the MRI uncomfortable and have difficulty complying [33–35]. However, our results showed that most patients did not experience MRI as burdensome and that the follow-up intervals are perceived as appropriate - even by frequently scanned glioblastoma patients. The debate about whether scan frequency and protocol duration need to be reduced should include the patients, as they might oppose longer control intervals. On the other hand, data implies that most patients will tolerate moderate scan duration extension for imaging research.
However, certain patients experienced at least moderate discomfort during the MRI scan. It is worthwhile to study this group in more detail.
Our most remarkable and also most consistent finding is the role of sex in the perception of MRI. Overall, women found the MRI procedure more uncomfortable than men, which was characterized by experiencing the MRI procedure as more unpleasant, more often being afraid of bad news, and being more stressed about the travel times. These findings align with literature suggesting that women experience more stress and anxiety also when confronted with a brain tumor diagnosis [36, 37]. Women also found receiving a cannula more unpleasant. Research has reported that sex is a risk factor for difficult venous access and that catheter insertion in women is more difficult, explaining the difference in comfort [38]. We conclude that sex, and most likely gender, is not sufficiently reflected in the current MRI workflow of brain tumor patients despite indicators for relevant differences between male and female perception. According to our results, women will benefit from shorter MRI protocols – and should innovation permit it –= even GBCA-free ones. The discussion between patient welfare and patient clinical needs should therefore be carefully balanced.
The age, number of previous, and diagnosis scans had surprisingly little impact on patients’ MRI perception. Increasing age is a known stress factor for patients and MRI technicians [39]. In our study, we could only confirm a tendency below the significance threshold regarding age: older patients tended to experience the MRI scan as longer and less comfortable than younger patients. This is relevant as brain tumor MRI protocols are particularly lengthy.
Patients with ten scans or fewer showed significantly less fear of receiving a cannula than patients with 30 scans or more. While the probability of a negative experience with cannulas increases with the growing number of scans, this contrasts with what would be expected as dictated by exposure therapy. With exposure therapy, frequent engagement with anxiety-provoking stimuli, such as cannulas, can reduce and disconfirm a person’s fearful projections towards the respective stimulus [40, 41].
Patients with a low-grade lesion experienced significantly more claustrophobia than patients with a high-grade lesion. Patients in the low-grade group had a mean age of 41 years, while patients in the high-grade group had a mean age of 49, as expected. Even though the age differences between the two groups were normally distributed, the age difference could explain this finding as younger patients tend to be more stressed [42]. As younger patients with low-grade lesions will likely receive more follow-ups during their life time, any scientific innovation towards shorter protocols will be particularly in their favor. Clinically, the time between scans, the number of included sequences, and the decision of administering contrast is generally based on the lesion type. However, our results show that tumor type, a reflection of disease severity, does not play a relevant role in the perception of MRI. While our research did not focus on the patient-disease relationship, there may be a link between the patients’ tolerance for number of follow-up scans and scan duration and the type of disease.
An estimated ~ 40% of all MRI scans in neuroradiology are GBCA-dependent [43]. Therefore, patient opinion on gadolinium should be considered with the aim of shared decision-making [44]. Our results show that most patients would opt for an MRI scan without GBCAs if considered diagnostically non-inferior, supporting research in that direction. However, patients showed a profound lack of knowledge of GBCAs, including insufficient knowledge regarding possible adverse effects despite being a frequently prescribed diagnostic agent. Patients seemed to be poorly informed and could thus not make optimal decisions about their welfare. At this point, it must be understood that patients in the Netherlands will usually never meet with a radiologist, nor is written informed consent for MRI examinations with GBCA mandatory. Potential contraindications for MRI are ruled out by the clinician ordering the MRI scan. A detailed procedure description for the patient is usually not part of this conversation. Especially considering that pharmaco-safety agencies urge clinicians to reduce the use of gadolinium in the clinical workflow of glioma patients [16, 45], patients should be well-informed about the added value of GBCAs and their possible harm to the human body [13].
There are several limitations to this study. First, this is a monocentric study with Dutch patients only, with consequences for data interpretation. The sample was, however, representative of the disease's general prevalence regarding diagnosis, age, and sex distribution [46]. Patients for whom the questionnaire was too much of a burden were excluded, as were non-Dutch-speaking patients due to the language barrier. This biases the study, potentially underestimating the MRI burden by excluding the sickest patients and patients with a different cultural background. Further, the reference number of MRI scans derived from hospital records is a minimum estimate. Patients could also have been scanned elsewhere. However, patients in the Netherlands usually adhere to one clinic only for treatment and follow-up - making a relevant deviation in the correct total number of scans unlikely.
In summary, this study finds that patients with primary brain tumors generally have positive experiences with neuro-oncological MRI. Especially women, however, would support endeavors towards GBCA-free MRI diagnostics and shorter protocols. Approaches to reduce imaging frequency are neither a patient priority, nor preference. A lack of knowledge on GBCA indicates that shared decision-making remains an unreached goal in glioma imaging.