Abstract
Background: Follow-up information for cancer patients transitioning from active treatment to survivorship care is important for ensuring patient engagement and appropriate care coordination. Few studies have examined whether disparities exist in the receipt of information on late and long-term effects among diverse cancer patients during the initial Affordable Care Act implementation period, a time when care quality and care coordination gained increased attention.
Methods: We conducted mail surveys between September 2015 and June 2016 in a population-based sample of breast cancer (BC) and colorectal cancer (CRC) cases from the New Jersey State Cancer Registry to understand cancer care experiences. We included cases diagnosed in 2012-2014. Sampling was stratified by age (21-64 years vs. > 64 years) and oversampled for cases with Medicaid coverage or uninsured at the time of diagnosis. We examined overall patient-reported responses about receiving follow-up care information and also whether receipt of follow-up information differed by race/ethnicity or insurance type. Significant differences between groups were determined at p <0.05 level using chi-squared and t-tests.
Results: A total of 180 breast and 60 colorectal cancer cases participated in the study. Approximately 13% of cases were Hispanic, 7% non-Hispanic black, and 68% non-Hispanic white. At the time of diagnosis, 14% of BC and 22% of CRC patients were uninsured. A high proportion of breast cancer (84%) and colorectal (77%) cancer cases received detailed information from their cancer care provider about the need for regular follow-up care and monitoring post-treatment. Similarly, high proportions (96% and 90%) of BC and CRC patients, respectively, received written instructions on when to return for checkups. A much smaller proportion of patients of both cancer types combined reported receipt of written summaries of their cancer treatment (42%), detailed discussion with their providers about the late or long-term effects of treatment (58%) or lifestyle and health recommendations (54%). We observed significant differences in the receipt of follow-up information by insurance status but not race/ethnicity. For example, having a detailed discussion of the late or long-term side effects from treatment with providers were lower among uninsured (49%) and Medicare patients (54%) compared to privately-insured (64%) and Medicaid patients (71%). Similarly, a higher proportion of uninsured patients (34%) and Medicaid patients (30%) did not discuss the emotional of social needs related to their cancer treatment at all with their doctor compared to a lower proportion of privately-insured patients (25%).
Conclusions: Our findings from a diverse population-based sample of recently diagnosed BC and CRC cases provide insight on patient reported experiences of care during the initial Affordable Care Act implementation period. Although it is reassuring that the majority of patients received information about the need for regular follow-up and when to return for check-ups, it is alarming that roughly half of the participants in our sample did not get a summary of their treatment or detailed information from their doctor about the long-term effects of their care. These results suggest the need to improve care coordination and follow-up efforts among specific disadvantaged subgroups, particularly in settings serving uninsured or underinsured groups. Policy and intervention efforts should focus on addressing how to better coordinate care between oncologists and primary care providers, particularly for underserved cancer patients, as the number of cancer survivors continue to grow nationally.
Citation Format: Jennifer Tsui, Antoinette M. Stroup, Carolina Lozada, David Rotter, Natalia L. Herman, Dirk F. Moore, Grace L. Lu-Yao. Racial/ethnic and insurance-based disparities in receipt of long-term follow-up care information among a population-based sample of breast and colorectal cancer patients in New Jersey. [abstract]. In: Proceedings of the Ninth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2016 Sep 25-28; Fort Lauderdale, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2017;26(2 Suppl):Abstract nr A22.