Revealing the unseen symptom burden in childhood cancer survivors

A childhood cancer diagnosis and the subsequent treatment with chemotherapy, radiation or other therapies that patients undergo is something many people are familiar with. But how do you really define the burden of symptoms that patients experience? Symptom burden refers to the frequency and severity of a patient's perceived abnormal health status, and how much these abnormalities affect their body and emotions.

Quality of life and symptom burden after treatment in childhood cancer survivors is an understudied area. Additionally, while the health impact of contextual factors such as one’s family and neighborhood on the presence of symptoms has been explored in adult survivors, such factors have not been thoroughly examined in children. There is a need for a comprehensive approach to symptom management in pediatric cancer survivorship. Understanding how contextual factors contribute to symptom burden can help address problems and foster a sense of meaning and purpose that aids in symptom management.

Researchers at St. Jude Children’s Research Hospital seek to identify ways to improve the long-term health of childhood cancer survivors and reduce the late effects of cancer treatments – and they have the data to do it. The St. Jude Lifetime Cohort Study (St. Jude LIFE) brings childhood cancer survivors back to St. Jude for follow-up assessments as they age, gathering information that is used to guide follow-up care. St. Jude LIFE also aids in the development of interventions to promote survivor’s health. One approach St. Jude LIFE uses is to assess the symptom burden experienced by childhood cancer survivors. This offers insight into how caregivers’ anxiety, neighborhood conditions and survivors' perceptions of life's meaning and purpose influence this burden.

Revealing the hidden struggles of young cancer survivors

Existing research on how external environments affect health in childhood cancer survivors has mainly focused on those who have reached adulthood. This has left a gap in our understanding of the experiences of children and adolescents who are at least five years post-diagnosis and younger than 18 years old. Published in JAMA Network Open, a study from St. Jude examines both physical and psychological symptoms and explores the impact of various personal and contextual factors. This study provides a comprehensive understanding of the challenges faced by young survivors and suggests ways to develop targeted interventions to improve their quality of life.

"This study is quite unique,” said corresponding author I-Chan Huang, PhD, Department of Epidemiology and Cancer Control. “We focused on childhood cancer survivors that were still younger than 18 years of age," he explains. This age range is often considered a "honeymoon period" post-treatment, where severe symptoms are not expected. However, Huang's research reveals a different story. 

"It is easy to assume that these young survivors are in good shape in terms of their quality of life. We don't expect them to have a lot of symptoms - but that is not always a safe assumption," Huang noted. The study showed that childhood cancer survivors may experience late effects from treatment that can increase their symptom burden, and that need to be addressed early on.

Factors driving symptom burden

By examining contextual factors, investigators found that nearly 40% of young survivors self-reported moderate or high cumulative overall symptom burden. “We believe different contextual variables influence their symptom burden," stated Huang. The study found that caregiver's anxiety contributes to symptom burden. "If parents have anxiety, there is almost a two-fold higher risk that survivors will have a higher symptom burden," Huang explained. 

Assessing caregiver anxiety involves asking caregivers about their feelings of worry, nervousness, fear and tension. Research on caregiver-patient relationships shows that when caregivers are anxious, they unintentionally pass this unease to the patient. “With this in mind, the association between the caregiver’s anxiety and the survivor’s high worry symptoms is expected,” said first author Madeline Horan, PhD, Department of Epidemiology and Cancer Control. “Treating the whole family can improve symptom burden and other health outcomes in children who have survived childhood cancer.” 

Additionally, the Social Vulnerability Index (SVI) from the U.S. Centers for Disease Control measures vulnerability based on three themes: socioeconomic, demographic, and housing/transportation. The study used this index to demonstrate that neighborhood adversity is the second-highest contributor to symptom burden. “We categorized neighborhoods into high and low social vulnerability using the SVI, with a focus on the top 90% most vulnerable areas in the country,” said Huang. 

They compared those living in the most deprived areas to those in less deprived areas to understand how these factors affect young cancer survivors. Children living in high-vulnerability neighborhoods had a five-fold higher risk of experiencing high symptom burden. 

Protective factors of symptom burden

Interestingly, the study identified protective factors that can mitigate symptom burden. One such factor is the survivor's sense of meaning and purpose. “Having a greater sense of meaning, purpose, hopefulness and optimism about life can provide young survivors with inner strength, resilience and motivation to persevere through difficult cancer-related symptoms and other late effects,” said Horan. Greater meaning and purpose in life are linked to lower symptom burden in survivors, indicating psychological resilience. These survivors report lower symptom burden, even if they experience the same health issues as others. “We found the association between the parents' anxiety decreases with high levels of survivor resilience. This protective factor reduced the impact of negative contextual factors on symptom burden by 30 to 40%,” Huang stated. 

Adjusting for meaning and purpose does not change the influence of neighborhood adversity, however. While personal and family issues can be mitigated by personal resilience, community factors need broader solutions.

“Offering interventions that are parent-focused, as well as resources to cope with challenging physical environments in their neighborhoods may improve symptom burden in young childhood cancer survivors,” said Horan. When survivors successfully find meaning in their cancer journey, they adapt better to their symptoms. Having a sense of purpose also motivates them to stick to treatments and self-care practices, which is essential for managing symptoms over time. These skills can be taught to enhance resilience and reduce symptom burden. Huang concludes, “We need to find a way to identify and screen for the origin of their symptoms, then provide the necessary intervention."