In this study of long-term survivors of aggressive lymphoma, we found a 37% incidence of clinically significant anxiety symptoms and a fear of recurrence that became especially prevalent in the time leading up to surveillance scans, based on qualitative interviews. The only factors independently associated with anxiety symptoms in multivariate analysis were the doctor–patient relationship, where a better relationship correlated with less anxiety symptoms, and relapse, where a history of relapse was associated with greater anxiety symptoms.
Of the participants, 37% reported clinically significant anxiety symptoms, double that of the general population [14
]. Anxiety has not been previously studied extensively in lymphoma survivors. The largest study of 557 HL survivors found a 14.5% incidence of anxiety using the Hospital Anxiety and Depression Scale, higher than the general Norwegian population [15
]. Other studies have measured psychological distress using the Brief Symptom Inventory, with 21% of HL survivors reporting a high score [16
]. In our study, interviews tended to be around the time of a follow-up visit, and therefore, we recognize that it is possible that anxiety level is higher than if the interviews occurred at a different time. Alternatively, our survey may have found higher levels of anxiety than other studies due to a different population or screening instrument, or using a more conservative cut-off for clinically significant symptoms. Nonetheless, even transient significant anxiety levels are important and warrant consideration of potential interventions.
There were no demographic parameters that were correlated with anxiety in multivariate analysis. Survivors who had a history of relapsed lymphoma had higher anxiety levels than others, suggesting this is a population at risk. In this cross-sectional study, anxiety symptoms did not decrease with increasing years since diagnosis, indicating that these issues are not limited to the first few years after treatment. A longitudinal study to explore these issues is warranted.
Anxiety specifically regarding surveillance scans in cancer survivors has not previously been well characterized in the literature. A study of survivors of breast, colorectal, and prostate cancer found that 36%–44% express worries about testing, and cancer-related health worries (including worry about future diagnostic tests) were the strongest predictor of anxiety and depression [9
]. To our knowledge, there are no data on anxiety and diagnostic testing in lymphoma survivors. This study has value in elucidating the focus of anxiety symptoms in survivors of aggressive lymphoma, which are linked to fear of recurrence around the time of a routine surveillance scan based on our data. Many survivors reported that anxiety symptoms worsen before a follow-up appointment, peak leading up to obtaining the results of the scan, and lessen immediately afterwards. It is hypothesized that many lymphoma survivors have underlying anxiety symptoms, which are exacerbated by surveillance scans.
Surveillance scans in lymphoma survivors are performed frequently, despite no randomized evidence that they lead to improved outcomes. Scans can lead to false-positive findings and increased testing, high cost to our health care system, and radiation exposure. In addition, we have demonstrated another important adverse effect—scans are a significant source of anxiety for patients. We believe this provides further evidence of the potential value of minimizing surveillance scans in the asymptomatic lymphoma survivor.
We show that good patient-centered communication lessens anxiety. Previous studies of physician–patient communication have shown the ability to improve patient health outcomes, including anxiety [17
], although most studies measure a single communication episode and we measured the patient’s perception of the overall relationship. Physicians should recognize that fear of relapse is the greatest worry in this group of lymphoma survivors despite the actual risk being very low, and this fear was irrespective of the number of years since treatment. While in general, patients had a very favorable perception of their physician, only 74% felt that their physician helps them cope with uncertainty. Our data support a strategy to help survivors manage fears and provide education and reassurance, particularly around the time of follow-up scans. In particular, reiteration of the true risk of relapse to patients may be helpful in relieving fears of patients who harbor an inaccurately high perception of risk. Utilizing a survivorship care plan as a tool to deliver this message and minimize anxiety may be one useful strategy.
Strengths of this study include both the qualitative and quantitative methods used, which provided insight into patients’ views on surveillance scans, an understudied area. Limitations include the cross-sectional design, so cause and effect conclusions cannot be drawn from the associations. It is a small study with the majority of patients from one academic medical center. Lastly, the measurement of the doctor–patient relationship is novel and therefore the validity and reliability are unknown.
In conclusion, we believe that our data provide compelling rationale for prospective studies of less frequent follow-up imaging in patients with aggressive lymphoma after therapy, and question whether surveillance scans in asymptomatic patients with no clinical evidence of recurrence offer any benefit. It is possible that the harm of routine surveillance scans for survivors of aggressive lymphoma may outweigh the value, given the lack of randomized data on the effectiveness of the current practice standards, false-positive findings, high cost, radiation exposure, and negative emotional impact on patients.