Adolescent and Young Adult Brain Tumor Survivors Report Increased Anxiety Even Years After Successful Treatment for Relapse

Introduction

The last several decades have seen significant advances in the detection and treatment of pediatric brain tumors.^1,2 As a result, there is a rapidly growing cohort of adolescent and young adult (AYA) brain tumor survivors with unique needs that have yet to be fully understood. In comparison to their healthy counterparts, as well as survivors of other pediatric cancers, brain tumor survivors are more likely to be physically, cognitively, and psychosocially impaired.^2–5 In addition to the medical late effects that arise in the years following treatment, AYA survivors can also be faced with developmental and functional challenges, including decreased independence, difficulties navigating complex social environments, and a persistent sense of uncertainty about the future. ⁶

Contributing to the sense of future uncertainty in this population is the need for continued monitoring for disease recurrence. While all childhood cancer patients will be monitored for relapse after treatment, brain tumor survivors require closer monitoring over a longer time period than many other pediatric cancer survivors, as risk of relapse and treatment-related sequelae remains high even years after completed therapy.^2,5 Consequently, AYA brain tumor survivors are typically seen for frequent medical appointments and are often followed yearly with magnetic resonance imaging (MRI) or other imaging to detect recurrence. There is concern that frequent medical appointments during the survivorship period may hinder an AYA survivor's ability to move past the acute phases of their illness and treatment.^7,8 Fear of cancer recurrence is common in cancer survivors who typically report heightened periods of acute anxiety or “scanxiety” in the days and weeks leading up to follow-up visits,^9–11 but less is known about the impact of an actual relapse on emotional functioning. While clinically we know survivors experience acute anxiety and distress at the time of relapse, we were interested in investigating the potential long-term impact of psychological outcomes in AYA brain tumor survivors. We hypothesized that even years after being successfully treated for relapsed disease these survivors would exhibit increased incidences of clinically significant anxiety and depression compared with survivors who did not relapse.

Methods

Results

Discussion

Although many AYA cancer survivors adapt well after completion of treatment, a significant group of survivors will exhibit clinically significant psychological symptoms, including symptoms of anxiety and depression.^3,13 Our results indicate that AYA brain tumor survivors who experience relapsed disease are at particularly increased risk for symptoms of anxiety even when other demographic and treatment factors are adjusted for. While it could be expected that anxiety symptoms would gradually decrease over time following relapse, our findings indicate this is not always the case; almost a third of AYAs with relapsed brain tumors report significant anxiety even years after successful treatment for relapse. At least one prior study of cancer-related worry in a mixed diagnostic group of AYA survivors did not find that prior relapse was associated with increased health concerns, ²⁰ suggesting our results may be specific to AYA survivors of central nervous system (CNS) disease. At the same time, our results are broadly consistent with research on illness uncertainty suggesting that unpredictable medical outcomes are associated with increased psychological distress, including anxiety and depressive symptomatology in individuals with cancer histories. ²¹

As AYA brain tumor survivors are at risk for poor health outcomes, including relapse, our results, like those of prior studies, underscore the importance of ongoing psychosocial follow-up.^3,13,20 For AYAs with relapse history, and perhaps more broadly for those at elevated risk for relapse, receiving regular psychological follow-up in conjunction with their oncologic care is critically important. Patients with low-grade gliomas, for example, are often told their tumor is highly curable and less aggressive than other brain tumors, but their slow and potentially recurring nature may present significant psychological challenges. Family functioning has been shown to be associated with the impact of late effects on the quality of life in young adult brain tumor survivors ²² ; providing patients and families with anticipatory guidance about the expectable disease course and potential long-term effects may promote adaptive coping and facilitate early identification of associated psychological distress.

Our findings are limited by the modest size of our sample of AYA brain tumor survivors surveyed at a single institution, and the small number of these survivors who experienced a relapse. Although the study benefitted from multiple reporters, it lacked a “gold standard” mental health measure, such as a structured diagnostic interview that would provide a stronger measure of psychological adaptation. Future studies with larger samples will be needed to validate our findings, explore the impact of relapse of other cancer types on AYA's adjustment, and investigate how additional treatments required for relapsed disease may contribute to later psychological symptoms.

Conclusion

Despite these limitations, our results have important implications for clinical care of AYAs after brain tumor relapse. Established guidelines for pediatric oncology survivors call for regular assessment of their psychosocial needs.^23,24 In this study, survivors who experienced relapse were at increased risk for anxiety even years later, suggesting they should be closely followed. Although future research will need to further investigate the validity of AYAs self-report, our results are consistent with previous research,^13,25 indicating self-report is a key component for assessing AYA's psychosocial functioning, particularly for assessment of internal states, such as anxiety and depression.