A survey of more than 15,000 childhood cancer survivors (CCSs) revealed that many were unconcerned about their risk of health problems.
Thirty-one percent of CCSs said they were “not at all” or “not very” concerned about their future health, and 40% said they were “not at all” or “not very” concerned about developing new cancers.
Researchers say it isn’t clear what’s driving this lack of concern, but it is possible that some CCSs don’t know they have an increased risk of new malignancies and other health problems.
“Other possibilities include that some survivors may actually be aware of their increased risks and choose not to be concerned, or it may even be that some survivors are, indeed, following health guidelines and working with healthcare providers, leading to their lack of concern,” said Todd Gibson, PhD, of St. Jude Children’s Research Hospital in Memphis, Tennessee.
Dr Gibson and his colleagues conducted this research and reported the results in Cancer.
The researchers analyzed data on 15,620 CCSs and 3991 of their siblings who did not have a history of cancer. The data came from questionnaires administered to participants in the Childhood Cancer Survivor Study.
At baseline, the median time from CCSs’ cancer diagnosis was 17 years (interquartile range [IQR], 14-21). Their median age at baseline was 26 (IQR, 22-31 years), and the siblings’ median age was 29 (IQR, 24-35).
When respondents were asked about their level of concern regarding their future health, the answers were as follows:
- 12% of both CCSs and siblings were “not at all concerned”
- 18.7% of CCSs and 21.6% of siblings were “not very concerned”
- 23.2% of CCSs and 24.1% of siblings were “concerned”
- 21.4% of CCSs and 22.2% of siblings were “somewhat concerned”
- 24.8% of CCSs and 20.1% of siblings were “very concerned.”
When respondents were asked to rate their level of concern about developing a new cancer, the answers were as follows:
- 17.2% of CCSs and 16.3% of siblings were “not at all concerned”
- 22.8% of CCSs and 22.2% of siblings were “not very concerned”
- 21.1% of CCSs and 25.1% of siblings were “concerned”
- 18.3% of CCSs and 18.4% of siblings were “somewhat concerned”
- 20.6% of CCSs and 18.1% of siblings were “very concerned.”
When the researchers adjusted for age, sex, race/ethnicity, education, and decade of diagnosis, CCSs were only slightly more likely than siblings to report concern about future health (relative risk, 1.12) or subsequent cancer (relative risk, 1.02).
“That similarity [between CCS and sibling answers] was really the major surprise in our findings,” Dr Gibson said. “Despite the fact that survivors have such a greatly increased risk of both second cancers and other health problems, their perception of risk was not always commensurate with their actual risk.”
The researchers did find that CCSs were more likely to report concern about future health or developing cancer if they were female, non-Hispanic black or Hispanic, older, identified as having clinical anxiety, or had already experienced a grade 3/4 chronic condition or subsequent cancer.
However, it isn’t clear why some CCSs are concerned about their future health and others are not.
“At this point, we can only speculate, but the most obvious reason [for lack of concern] would be that survivors may not fully understand their risks,” Dr Gibson said. “We do know from prior studies that not all survivors are fully aware of the specific treatments they received and how those might increase their risks of late effects.”
“If, however, survivors are aware but not motivated or sufficiently aroused to be concerned, then more motivational education will have to be developed. In any case, these findings offer a teaching point that we can use to emphasize to all survivors that they need to understand their risks.”