One-third of childhood cancer survivors fear recurrence as adults
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One-third of childhood cancer survivors reported high levels of fear of cancer recurrence even decades after treatment, according to results of a cross-sectional analysis.
Researchers evaluated a subset of participants from the Childhood Cancer Survivor Study, a retrospective cohort study of long-term childhood cancer survivors who underwent treatment at 31 North American institutions between 1970 and 1999.
The current analysis included 229 people [50.2% women; mean age, 39.6 years (± 9.9); mean time since diagnosis, 31.7 years (± 8.4)].
Participants completed an online survey assessing psychosocial measures between October 2018 and April 2019. Researchers also used medical records to obtain cancer- and treatment-related information.
Results showed 16.6% (95% CI, 11.6-21.6) of participants reported clinically significant fear of recurrence, and 15.7% cited high fear of cancer recurrence.
“This is a very real fear for some survivors — even ones who are 20 [or] 30 years [beyond] diagnosis and treatment — and this might not be something they bring up on their own in their appointments with medical providers,” researcher Nicole M. Alberts, PhD, associate professor in the psychology department at Concordia University in Canada, told Healio. “We want clinicians to know that there are good tools that are quick and easy to use that can help open up the conversation and direct patients toward care.”
Healio spoke with Alberts about how fear of recurrence can impact a survivor’s quality of life, and how oncologists can communicate with survivors about this.
Healio: Before your study, what evidence existed about the prevalence of fear of recurrence among childhood cancer survivors?
Alberts: In one of our prior studies that used data from St. Jude Life Cohort Study, we found that about 64% had worry about a new type of cancer developing, and about 33% had worry about a relapse or recurrence.
Although that study was very helpful, we didn’t have a measure by which we could determine that someone had a clinical level of fear of cancer recurrence. This is important in terms of helping us understand whether survivors are experiencing fear of recurrence at a level that is impacting their day-to-day functioning and, therefore, intervention may be helpful.
Healio: Why is it important to have these measures?
Alberts: These types of fears and worries are normal to an extent — almost everyone who has had cancer experiences them. In some ways, this fear can be adaptive or motivating. It can encourage people to go to their follow-up appointments, get their scans and engage in a healthier lifestyle. However, we also know there is a balance—sometimes it can tip over into anxiety at more of a clinical level. Here, the anxiety and worry is coming up daily, and it is impacting people’s behavior. It’s causing a great deal of distress and affecting their ability to function. It’s at this level where we think it would be helpful for a survivor to connect with a mental health provider, such as a psychologist. In our most recent study, we were able to use this more comprehensive, validated measure that has clinical cutoff scores and allows us to identify clinically significant levels of fear of cancer recurrence.
Healio: What motivated you to conduct this study?
Alberts: Almost all of the research that examined fear of recurrence has been done in the field of adult cancer, and that is helpful and informative. We were motivated to do this because there was a real gap in the childhood cancer survivorship literature. We were especially interested in understanding who is experiencing fear of recurrence at that higher level.
Healio: How did you conduct this study and what did you find?
Alberts: We used an app-based online survey in which survivors completed a self-report measure of fear of cancer recurrence, as well as self-report measures of depression, general anxiety, sleep and other psychosocial factors. The key finding was that about a third of the survivors in our study reported experiencing an elevated level of fear of cancer recurrence. When we looked at the predictors or risk factors, we found that unemployment, neurologic chronic health conditions, treatment with pelvic radiation, and previously having an amputation or limb-sparing surgery were associated with clinical levels of fear of recurrence.
Healio: Did anything surprise you?
Alberts: Because there was so little about this topic in the childhood cancer survivorship literature, we weren’t sure what to expect. Personally, I thought it would be a concern for these survivors, so I wasn’t overly surprised. Some clinicians might understandably be surprised, though, that someone who is 20 or 30 years post-cancer treatment may be experiencing this type of worry and anxiety. Anxiety is interesting — even when a fair amount of time has passed and people’s risk of recurrence or the development of a subsequent malignancy may vary, elevated anxiety can still persist.
Healio: What are the implications of your findings?
Alberts: Our study helps show that this is something that is fairly common for patients, whether they mention it to their physicians or not. For some people, it is occurring at a level that is impacting their functioning and well-being. More screening around fear of recurrence could be helpful. Oncologists are very busy, but we do have screeners that are one item or a few items long, and they could be administered easily and quickly in clinic. These types of tools can help open a larger conversation about whether it might be helpful for the patient to check in with a psychologist.
Healio: What interventions can help survivors of childhood cancer deal with fear of recurrence?
Alberts: When fear of recurrence is affecting a patient’s well-being, we do have useful psychological interventions. We have cognitive behavior therapy, which is a well-known therapeutic approach. We also have another realm of treatments called acceptance and commitment or mindfulness-based therapies. Less intensive psychological interventions such as psychoeducation and peer support groups have also proven to be helpful. So, there definitely are evidence-based psychological treatments that can help patients reduce these fears, improve function and get back to their lives.
References:
- Concordia University. One-third of childhood cancer survivors experience significant fear that it could come back, new Concordia study reveals (press release). Available at https://www.concordia.ca/news/stories/2024/10/150/one-third-of-childhood-cancer-survivors-experience-significant-fear-that-it-could-come-back-new-concordia-study-reveals.html?c=/research/news. Published Oct. 15, 2024. Accessed Oct. 30, 2024.
- Pizzo A, et al. JAMA Netw Open. 2024;doi:10.1001/jamanetworkopen.2024.36144.
For more information:
Nicole M. Alberts, PhD, can be reached at nicole.alberts@concordia.ca.
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