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Identifying Health Motivations, Future Concerns of Childhood Survivors

May, Brandon

doi: 10.1097/01.COT.0000549557.29693.18
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childhood cancer survivors

childhood cancer survivors

Researchers from St. Jude Children's Research Hospital in Memphis, Tenn., have found that a substantial number of childhood cancer survivors are likely to express a lack of concern regarding their future health risks, including their risks for severe chronic health issues and subsequent carcinomas associated with their initial cancer (Cancer 2018;124(16):3436-3444). This lack of concern among childhood cancer survivors may be associated with the lower-than-optimal level of preventative screening among this patient population.

The study, led by Todd M. Gibson, PhD, assessed self-reported levels of concern in adult survivors of childhood cancer (n=15,620) as compared with siblings without a history of cancer (n=3,991).

Patient data were acquired from the Childhood Cancer Survivor Study, a retrospective study of pediatric patients diagnosed with central nervous system tumor, leukemia, neuroblastoma, Hodgkin lymphoma, kidney cancer, non-Hodgkin lymphoma, soft tissue sarcoma, or bone sarcoma at ages <21 years. All patients received care at a North American institution between the years of 1970 and 1999. Participants in the cohort study had a post-cancer survival of ≥5 years. For comparison of outcomes, researchers selected a random sample of the survivors' siblings, and both groups completed baseline and follow-up questionnaires regarding demographics, lifestyle, psychosocial factors, and several other outcomes.

Levels of concern for future health risks were assessed in survivors at a median age of 26 years (interquartile range [IQR], 22-31 years) and a median duration since their initial childhood cancer diagnosis of 17 years (IQR, 14-21 years). In the unadjusted analysis, lack of concern regarding future health was 30.7 percent (95% CI, 30.0%-31.4%) and 33.6 percent (95% CI, 32.1%-35.1%) in survivors and siblings, respectively. In the analysis adjusted for age, sex, education, race/ethnicity, and decade of diagnosis, survivors had a modestly higher prevalence of concern for future health than siblings (risk ratio [RR] 1.12; 95% CI, 1.09-1.15) but a relatively similar level of concern for subsequent cancer (RR, 1.02; 95% CI, 0.99-1.05).

High-dose radiation (≥20 Gy) during childhood cancer treatment was associated with a greater likelihood of reporting concern for future health (RR, 1.13; 95% CI, 1.09-1.16) and concern for developing a subsequent cancer (RR, 1.14; 95% CI, 1.10-1.18) compared with siblings. Despite these findings, about 35 percent and 24 percent of survivors previously exposed to high-dose radiation were not concerned about subsequent cancers or their future health, respectively.

“I think it is important to note that some survivors have relatively low risks of overall health problems, and others may not be overly concerned about their health because they are actively following survivorship guidelines,” Gibson explained.

While the study findings clearly indicate that some survivors lack concern for their future well-being despite their increased health risks, the study does suggest that having concerns may not be fully warranted in some survivors. “Further research is needed to understand the reasons for different levels of concern, and how these concerns impact behaviors such as following established survivorship guidelines,” he added.

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Survivor Education Needs

Physicians and additional health providers who care for childhood cancer survivors represent the indispensable point of reference for education on future risks. “Survivors and their health care providers should be informed about the specific cancer treatments they received and the late health effects associated with those treatments,” Gibson commented. “The Children's Oncology Group Long-Term Follow-Up Guidelines (www.survivorshipguidelines.org) provide a wealth of information about health risks associated with childhood cancer treatments and specific guidelines for screening and management of potential late health effects.”

Survivor education should not be focused on needlessly alarming survivors or to cause worry, yet “the fact that the prevalence of some degree of concern was static or diminished over time suggests more effective communication strategies are needed to ensure survivors with an elevated risk of late effects are aware of these risks as they get older.”

Study investigators were unable to identify specific subgroups of patients who presented with particularly greater lack of concern for potential health issues. A surprising finding, according to Gibson, was that many survivors with higher risks of health complications associated with cancer and its treatments reported comparable levels of concern regarding future health or cancer development when compared to the sibling comparison group.

“It was also surprising that survivors were only slightly more likely to be concerned if they had been exposed to high doses of radiation or other therapies associated with increased health risks,” he noted. “We were not able to examine why survivors were or were not concerned in this study, so further research is warranted.”

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Additional Studies

This study adds to research from St. Jude on the late health effects in childhood cancer survivors. In June 2017, Gibson and colleagues led a study which sought to determine the incidence of severe, disabling, and/or life-threatening, or fatal chronic health conditions in 5-year cancer survivors (JAMA 2017;317(8):814-824).

Patient data from this study were also obtained from the Childhood Cancer Survivor Study (n=23,601), and the researchers focused on the incidence of chronic illness within a 15-year period following cancer diagnosis. Overall, improvements were found in regard to treatment protocols, which, as the study points out, have consequently reduced the rate of serious chronic late health issues among childhood cancer survivors.

The investigators found that relative incidence rates of subsequent neoplasm(s) declined with each 5-year increment for meningiomas (RR, 0.85; 95% CI, 0.75-0.97; p=.03), nonmelanoma skin cancers (RR, 0.75; 95% CI, 0.67-0.84; p<.001), and subsequent malignancies (RR, 0.87; 95% CI, 0.82-0.93; p<.001).

In another similarly designed 2017 study from St. Jude, Gibson and researchers found that childhood cancer survivors are more likely to develop hypertension when compared with the general population (Cancer Epidemiol Biomarkers Prev 2017;26(12):1705-1713). Hypertension in these patients were often uncontrolled, which has the potential to lead to and/or exacerbate current cardiovascular risk factors in these patients. Research findings similar to these may be helpful for improving survivors' awareness regarding their potential risk, particularly if they are communicated to the patient during a structured or semi-structured educational program. Rather than inducing alarm, patients may develop a more proactive approach to their care if they understand the scientific rationale behind their need to take preventative steps (e.g., screening) during their lifetime.

The self-reported nature of these studies limited the researchers' ability to identify specific factors associated with the participants' responses. While the study that assessed patients' level of concern was unable to determine underlying contributors to survivors' lack of future health concern, Gibson and colleagues theorize that several factors may play a role. “Some survivors may not know exactly what treatments they received as children or may not fully understand the health risks associated with their childhood cancer treatments.”

Brandon May is a contributing writer.

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