Adult survivors of childhood cancer are at-risk for a myriad of late effects related to their cancer treatment, including early onset cardiovascular disease, stroke and second malignancies.23–27
Much of morbidity and mortality related to the childhood cancer therapy received occurs during young adulthood with a long latency after the initial exposure.3–6
It is important for adult survivors of childhood cancer to have access to long-term follow-up care and cancer screening, with the intent to prevent or lessen future morbidity and mortality. Affordable health insurance plans and/or public programs are an important factor toward ensuring survivor-focused health care.
To our knowledge, this is the first large study of adult survivors of childhood cancer from across the U.S. to examine the influence of insurance type, by three ethnic groups, on survivor-focused and general preventive health care utilization. There were several notable findings. Despite being a significantly more disadvantaged group with high rates of poverty, survivors with public health insurance reported utilizing survivor-focused health care at rates higher than survivors with private health insurance. This suggests that Medicaid/Medicare services are providing much needed access to care for high risk survivors with serious health conditions related to their previous cancer treatment. Our findings are similar to other studies conducted among low-income populations which have found that having any type of health insurance coverage, including public, has a significant impact on access to needed health care services.28
In contrast, a substantial proportion of uninsured survivors with serious chronic diseases did not report utilization of survivor-focused or general preventive health care. Large population-based studies have demonstrated significant benefits of public health insurance programs on the receipt of quality health care, as well as, improvements in the continuity of care and receipt of preventive health services.29–32
Similar policy initiatives, in which both the federal and state governments finance a public insurance plan for low income, at-risk childhood cancer survivors, could provide a vital safety net to improve access to health services.
We found significant differences in the rates of utilization of general preventive health care within the different categories of insurance coverage. We analyzed the three ethnic groups separately because health care utilization can vary by ethnicity for various factors, including cultural influences such as acculturation and nativity.33–35
Similar to other studies, we found lower reported rates of utilization of general preventive health care for the uninsured across all three ethnic groups.36
In the general population, uninsured adults are more likely to be diagnosed with advanced stage cancers due to poor access to cancer screening.37–40
We found lower probabilities for reporting cancer screening practices (clinical breast exam and Pap smear) for both uninsured and publicly insured NHW females. This finding of lower utilization rates in uninsured and publicly insured NHW survivors has similarly been observed in other cancer control studies. For example, in a study examining the breast cancer screening practices of uninsured woman, they found that uninsured NHW females (even after controlling for SES factors) had lower reported utilization than Black and Hispanic woman.41
Community level factors, specifically county-level proportions of uninsured woman, impacted on breast cancer screening rates. Woman who lived in counties with higher rates of uninsured were less likely to be screened. This county level effect on screening rates, however, had little impact on those who had household income levels, between $25,000–$75,000. A second study, evaluating county level covariates (including residence in health professional shortage areas, urban/rural setting, racial/ethnic composition, and number of health centers/clinics) found that Black women were more likely than NHW women to report Pap smears. Among woman who resided in urban areas with lower primary care physician supply, there were lower rates of Pap smear use. Woman in rural areas were also less likely to report Pap smear use.42
Although the explanatory factors for the observed differences for NHW survivors in this CCSS study are not known, community level factors that may impact on healthcare utilization for diverse groups of survivors, should be explored in future research. 28, 43
We also found lower reported rates of dental care utilization for both the uninsured and publicly insured compared to privately insured survivors. In the general population, adult Medicaid beneficiaries have less utilization of dental services than privately insured adults.44
In states evaluating methods to enhance access to dental care services, improvements in utilization occurred when Medicaid programs reimbursed dental charges at rates comparable to private dental rates.45, 46
Given the significant risk for delayed and poor dental development in childhood cancer survivors, policy considerations to improve necessary dental care services for survivors are needed.47, 48
This study shows that public insurance programs result in high rates of reported utilization of survivor-focused health care. Specifically, we found that both Hispanic and NHW publicly insured survivors had a higher likelihood of reporting a cancer center visit compared to privately insured survivors. This finding was unanticipated as we hypothesized that privately insured survivors would have the highest utilization of survivor-focused health care. There are several possible explanations. First, having a cancer diagnosis reflects a “teachable moment” particularly for survivors with public insurance.49, 50
If a cancer patient with a lower socioeconomic status enters the public health care system for the first time due to the need for cancer treatment, they may be more motivated to continue the recommended follow-up. They are now able to utilize health care services that may have not been available prior to their diagnosis of cancer. In contrast, for those survivors with private insurance, they may have barriers to utilize survivor-focused health care because of time missed from work, large out-of-pocket spending, higher deductibles, co-payments, and/or lifetime caps in insurance coverage.51
A second explanation for our finding may be that the quality of care for publicly insured survivors is influenced by the hospital type where they receive care. In the Medicare population, black or poor patients are more likely to receive care in urban teaching hospitals which deliver higher quality of care.52
Although black and poor patients were found to receive lower quality of care, when adjusted for hospital type, the receipt of care in these urban teaching hospitals almost completely offsets the poor quality care they received within each hospital. The authors found, through the use of zip code data, that black or poor patients are almost two times more likely to receive care in urban teaching hospitals rather than in rural or non-teaching hospitals. It is also possible that adult childhood cancer survivors are more likely to receive their survivorship care in urban teaching hospitals as the vast majority of pediatric oncology care is delivered within academic centers.
We found lower reported utilization of survivor-focused and general preventive care for uninsured survivors. We hypothesize these findings may be due to lacking a usual source of care, being underinsured, and lapses in insurance coverage.11, 28, 53
Since the primary causes of late mortality among adult childhood cancer survivors include cancer recurrence or development of a second malignancy, affordable access to general preventive care, including cancer screening, is critical for survivors.3
It will be important for future research to evaluate the effect of the recent national policy changes including the Patient Protection and Affordable Care Act (passed in the Senate, December 2009) and the major expansion of Medicaid.54
When interpreting our study results, there are the following limitations. Although this is the largest national cohort of childhood cancer survivors, the insurance status and SES of non-participants is not known. As a result, there may be a selection bias in our sample, including a possible lower representation of uninsured survivors or those with a lower SES, which could select for those survivors who are more likely to utilize care thereby decreasing differences observed across insurance groups. Using self-report data for the measurement of utilization of survivor-focused and general preventive health care, can result in an overestimation of receipt of services because of recall bias.55, 56
Our findings demonstrate a statistically significant lower probability of reporting survivor-focused and general preventive health care for uninsured childhood cancer survivors. These findings further emphasize the need to develop targeted policy efforts to improve access to affordable health care options for adult survivors of childhood cancer. A third limitation is the use of current insurance status alone and lack of data regarding the continuity of insurance status for survivors in the sample. Previous population-based studies demonstrate that the uninsured, as well as those unstably insured (i.e. lapses in continuous insurance coverage), report nearly the same rates of poor access to care.43
Future research examining the effect of uninterrupted insurance coverage on access to survivor-focused and general preventive health care in young adult survivors is essential.
In summary, a significant proportion of uninsured adult survivors of childhood cancer, across all ethnicities, have lower utilization rates of survivor-focused and general preventive health care. Targeted policy changes directed at greater access to affordable health care for all adult survivors of childhood cancer is critical given the significant burden of chronic disease due to cancer treatment at a young age.