Fear of Recurrence Is Common Among Adult Survivors of Childhood Cancer

Fear of cancer recurrence (FCR) is common among adult survivors of childhood cancer who are at high risk for developing subsequent malignancies, with one-third of participants experiencing elevated FCR decades after treatment, according to a new study.¹

Fear of cancer recurrence is common among adult survivors of childhood cancer who are at high risk for developing subsequent malignancies. | Image credit: kenchiro168 - stock.adobe.com

These findings suggest that targeted interventions are needed as part of long-term survivorship care.

The cross-sectional study is published in JAMA Network Open.

“Associations between FCR and chronic pain as well as intolerance of uncertainty were examined, followed by an evaluation of the potential mediating role of intolerance of uncertainty in associations between FCR and anxiety and depression,” wrote the researchers of the study. “We hypothesized that intolerance of uncertainty would mediate the association between anxiety and FCR as well as depression and FCR.”

The study aimed to characterize the prevalence of and risk factors for clinically significant FCR (CS-FCR) in adult survivors of childhood cancer.

FCR or progression has been considered one of the most common unmet needs reported by patients with cancer.² FCR has been associated with impaired quality of life, low psychosocial adjustment, high levels of emotional symptoms, intrusive thinking, physical symptoms, and dysfunctional behavior. Moreover, FCR can be linked to greater health care utilization and costs.

To investigate prevalence of FCR, the researchers utilized data from the Childhood Cancer Survivor Study (CCSS), a retrospective cohort analysis involving individuals treated for cancer at 31 institutions across North America between 1970 and 1999. Participants were recruited between October 2018 and April 2019 and completed psychosocial assessments through an online survey. Cancer and treatment-related information were extracted from their medical records.¹

FCR was measured using the Fear of Cancer Recurrence Inventory-Short Form, and Poisson regression models were employed to estimate the prevalence ratios of CS-FCR. These models adjusted for variables like age and sex and examined how demographic, disease-related, treatment-related, and psychosocial factors contributed to FCR. Data were analyzed between May 2023 and July 2024.

The study found that 16.6% (95% CI, 11.6%-21.6%) of adult survivors of childhood cancer reported CS-FCR, with an additional 15.7% experiencing high levels of FCR.

Survivors who were unemployed (prevalence ratio [PR], 2.5: 95% CI, 1.3-4.8), had neurologic chronic health conditions (PR, 3.3; 95% CI, 1.8-6.1), had undergone pelvic radiation (PR, 2.9; 95% CI, 1.5-5.6), or had experienced amputation or limb-sparing surgery (PR, 2.4; 95% CI, 1.2-4.9) were at higher risk of CS-FCR.

Additionally, psychosocial factors were shown to play a significant role, with survivors reporting anxiety or depression (PR, 2.6; 95% CI, 1.2-5.9) or poor perceived health status (PR, 3.0; 95% CI, 3.1-9.7) being more likely to experience CS-FCR. Specifically, those with both elevated anxiety and depression (PR, 3.2; 95% CI, 1.2-8.4) had the highest risk.

Despite their strong results, the researchers noted limitations to their study. First, although adult survivors of childhood cancer are at low risk of their primary cancer recurring, they still face a high risk of subsequent malignant neoplasms, making it unclear how much each component of their disease and cancer journey contributes to the overall prevalence of FCR. Second, although one-third of survivors reported elevated or CS-FCR, only 32% of those contacted participated and minimal differences were found between participants and nonparticipants in the broader cohort. Third, the sample may have been biased, as participants required internet and smartphone access, suggesting future studies should offer alternative survey methods. Finally, the study's racial and ethnic diversity was limited.

Despite these limitations, the researchers believe the findings suggest that FCR is a prevalent and persistent issue among long-term childhood cancer survivors, emphasizing the need for routine screening and targeted interventions as part of survivorship care.

“Our findings help lay the groundwork for an improved understanding of FCR among long-term survivors, which is vital to informing psychological screening and intervention efforts,” wrote the researchers.

References

1. Pizzo A, Leisenring WM, Stratton KL, Siddiq N, Tinianov S, Lustberg M. Fear of cancer recurrence in adult survivors of childhood cancer. JAMA Netwrk Open. Published online October 3, 2024. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/10.1001/jamanetworkopen.2024.36144?guestAccessKey=86d77a95-69d4-48a1-aed7-cd01f4956337&utm_source=for_the_media&utm_medium=referral&utm_campaign=ftm_links&utm_content=tfl&utm_term=100324

2. Bergerot CD, Philip EJ, Bergerot PG, et al. Fear of cancer recurrence or progression: what is it and what can we do about it? Am Soc Clin Oncol Educ Book. 2022;42:18-27. doi:10.1200/edbk_100031