Investigators have found that one-third of adult survivors of childhood cancers may experience a severe fear of cancer recurrence that impacts their daily lives, according to a recent study published by Pizzo et al in JAMA Network Open.
Background
Although the number of survivors of childhood cancers are believed to be similar to those seen in survivors of adult-onset cancers, the findings highlighted the general lack of scientific literature on adult survivors of childhood cancers.
“We have not seen the use of strong measures of [fear of cancer recurrence] that have been validated or are reliable when it comes to studies with childhood cancer survivors, so it has been difficult to pin down prevalence estimates,” detailed lead study author Alex Pizzo, MSc, a PhD student in Clinical Psychology at the Behavioural Health Innovations Lab at Concordia University.
“Of course, some level of fear or anxiety around [fear of cancer recurrence] is entirely normal and justifiable,” added senior study author Nicole Alberts, PhD, Associate Professor in the Department of Psychology and the Tier 2 Canada Research Chair in Behavioural Health Interventions at Concordia University. “[However], we did not have much evidence about it reaching a level where it really starts to cause survivors distress or impact their school, work, or relationships with people,” she stressed.
Study Methods and Results
In the cross-sectional study, the investigators analyzed the data of 229 survivors of childhood cancers who participated in the Childhood Cancer Survivor Study—a retrospective cohort of cancer survivors treated between 1970 and 1999 across North America. A majority of the patients were decades past their last cancer treatment.
The respondents’ fear levels were assessed following a series of questionnaires they completed via a study application that asked them to rate their symptoms of fear of cancer recurrence, anxiety and depressive symptoms, self-perceived health, chronic pain, and other measures. The total scores indicated whether they experienced minimal, high, or clinically significant levels of fear of cancer recurrence.
The investigators discovered that 16.6% and 15.7% of the long-term cancer survivors reported clinically significant and high fear of cancer recurrence, respectively. For demographic variables, the cancer survivors who were unemployed or had some college or an undergraduate degree were most likely to experience the highest levels of fear of cancer recurrence. Additionally, cancer survivors with a neurologic condition who underwent pelvic radiation treatment, limb amputation, or limb-sparing surgery were most likely to experience fear of cancer recurrence.
Those with elevated levels of depression, anxiety, or both as well as those who rated their health as poor or fair were also more likely to experience clinically significant fear of cancer recurrence.
The investigators noted that the cross-sectional nature of the study did not reveal a bidirectional relationship between anxiety, depression, and fear of cancer recurrence—demonstrating that it is still unknown whether anxiety, depression, and poor health could lead to fear of cancer recurrence or vice versa.
Conclusions
The investigators hope the results of their study can inspire initiatives to improve treatment for adult survivors of childhood cancers, beginning with a brief screening of possible symptoms during medical consultations.
“It could start with a few simple questions, which could indicate whether additional assessment is needed,” Dr. Alberts suggested. “In terms of long-term survivorship, the kinds of psychological care survivors receive can vary. More screening would help, though having the resources available to support them is always challenging,” she emphasized.
The investigators proposed that interventions such as cognitive behavioral therapy combined with mindfulness-based therapies could help alleviate fear of cancer recurrence in adult survivors of childhood cancers.
“This group is unique because they are far out from their treatment. We don’t really know what kinds of worries they have. Do they worry about the original cancer coming back, or subsequent malignancies, or late effects? Knowing that information would be very useful in planning treatment for them,” Mr. Pizzo concluded.
Disclosure: The research in this study was supported by the Childhood Cancer Survivor Career Development Award, the National Cancer Institute, and in part via the Canada Research Chairs Program. For full disclosures of the study authors, visit jamanetwork.com.