Nearly Half of Childhood Cancer Survivors May Experience Symptom Burden Linked to Treatment, Sociodemographics


Childhood cancer survivors should be aware of any symptoms they experience during survivorship and communicate those with their care team.

Approximately 50% of childhood cancer survivors experience moderate symptom burden, and some may be at higher risk because of treatment or sociodemographic factors, according to recent study results.

Findings from this study also demonstrated that different factors — including educational attainment, medical insurance status and type of treatment — were associated with symptom severity.

“This is very important for cancer survivors (and) clinicians to be aware of the symptomatic problem,” said I-Chan Huang, study author and faculty member in the department of epidemiology and cancer control at St. Jude Children’s Research Hospital in Memphis, Tennessee, in an interview with CURE®. “The pain, fatigue, sleep, anxiety, depression, the impacts in terms of quality of life is important. (Cancer survivors may) not have the normal physical activity or social interaction as other people.”

Reports on Symptom Burden

The study, which was published in the Journal of Clinical Oncology, included 3,085 cancer survivors who self-reported on symptoms in cardiac, pulmonary, sensory, motor/movement, nausea, pain, fatigue, memory, anxiety and depression domains. They were then divided into four different symptom clusters (a group of symptoms) which included:

  • Cluster one (52.4%): Patients had low physical, somatization (pain, fatigue and nausea related to psychological symptoms) and psychological symptom burden.
  • Cluster two (16.1%): Patients had low physical, moderate somatic and high psychological burden.
  • Cluster three (17.6%): Patients had high physical, moderate somatic and low psychological burden.
  • Cluster four (13.9%): Patients with a high symptom burden in all three domains.

Clusters were used to assess symptoms rather than individual symptoms because it provides a more accurate representation of what childhood cancer survivors often experience, Huang explained.

“It’s very different compared to the traditional approach,” he said. “Basically, we look at the individual symptom, for example, pain, fatigue, sleep disturbance, etc., but the problem is that all cancer survivors, they have lots of symptoms. Not necessarily everybody only had one single symptom. If we diagnose the symptom as (groups), which means different types of a cluster represents different levels of the symptom burden for all childhood cancer survivors.”

Huang explained that the main takeaway from this study is that symptom burden is significant among childhood cancer survivors. Specifically in this study, 50% of survivors had at least one moderate symptom burden.

He also highlighted that there are different risk factors associated with each cluster type. Compared to survivors in cluster one, those in cluster four were more likely to have less than a high school education, no insurance and were exposed to corticosteroids (a class of anti-inflammatory drugs). Cancer survivors in cluster three were more likely to have received platinum-based chemotherapy and brain radiation.

“This means various treatment factors, also social demographic factors, (are) associated with different severity of the symptom clusters in our survivor population,” Huang said in an interview with CURE®.

Additionally, cancer survivors in cluster four reported the poorest performance in physical and neurocognitive status and most impaired quality of life compared to survivors in the other clusters.

Applying Findings to Survivorship Care

Huang noted that findings from this study may represent a need to shift some of the focus during survivorship care.

“I think that traditionally (in) our survivorship care we focus on the medical effects, for example cardiac, pulmonary, … the physical health conditions,” he said. “I don’t think that previous studies really pay attention to the symptom medical problems in our cancer survivors.”

It is important for childhood cancer survivors to communicate with their primary care doctor or survivorship specialist about any symptoms they might be experiencing. Their provider can then assess the symptom to possibly mitigate it or put them in touch with a specialist before it becomes a bigger problem, Huang explained.

“(Childhood cancer survivors) need to be aware of their symptomatic problems,” he concluded. “(They should) listen to their body. And if they feel something wrong don’t wait until they visit the survivorship clinic or see their primary care doctor. (They) need to communicate and contact their primary care doctor or survivorship clinician as soon as possible.”

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