Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study.

BACKGROUND: While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. This study was undertaken to assess the feasibility of using the NCI's Surveillance, Epidemiology, and End Results (SEER) Program registries to rapidly identify, recruit, and enroll individuals for survivor research studies and to assess their willingness to engage in a variety of research activities. METHODS: In 2016 and 2017, six SEER registries recruited both recently diagnosed and longer-term survivors with early age-onset multiple myeloma or colorectal, breast, prostate, or ovarian cancer. Potential participants were asked to complete a survey, providing data on demographics, health, and their willingness to participate in various aspects of research studies. RESULTS: Response rates across the registries ranged from 24.9% to 46.9%, with sample sizes of 115 to 239 enrolled by each registry over a 12- to 18-month period. Among the 992 total respondents, 90% answered that they would be willing to fill out a survey for a future research study, 91% reported that they would donate a biospecimen of some type, and approximately 82% reported that they would consent to have their medical records accessed for research. CONCLUSIONS: This study demonstrated the feasibility of leveraging SEER registries to recruit a geographically and racially diverse group of cancer survivors. IMPACT: Central cancer registries are a source of high-quality data that can be utilized to conduct population-based cancer survivor studies.

Financial Hardship and Quality of Life among African American and White Cancer Survivors: The Role of Limiting Care Due to Cost.

BACKGROUND: Financial hardship is common among cancer survivors and is associated with both limiting care due to cost and with poor health-related quality of life (HRQOL). This study estimates the association between limiting care due to cost and HRQOL in a diverse population of cancer survivors and tests whether limiting care mediates the association between financial hardship and HRQOL. METHODS: We used data from 988 participants (579 African American, 409 white) in the Detroit Research on Cancer Survivors (ROCS) pilot, a hospital-based cohort of breast, colorectal, lung, and prostate cancer survivors. We assessed associations between financial hardship, limiting care, and HRQOL [measured by the Functional Assessment of Cancer Therapy-General (FACT-G)] using linear regression and mediation analysis controlling for demographic, socioeconomic, and cancer-related variables. RESULTS: FACT-G scores were 4.2 [95% confidence interval (CI), 2.0-6.4] points lower among survivors who reported financial hardship compared with those who did not in adjusted models. Limiting care due to cost was associated with a -7.8 (95% CI, -5.1 to -10.5) point difference in FACT-G scores. Limiting care due to cost explained 40.5% (95% CI, 25.5%-92.7%) of the association between financial hardship and HRQOL overall, and 50.5% (95% CI, 29.1%-188.1%) of the association for African American survivors. CONCLUSIONS: Financial hardship and limiting care due to cost are both associated with lower HRQOL among diverse cancer survivors, and this association is partially explained by limiting care due to cost. IMPACT: Actions to ensure patients with cancer can access appropriate care could lessen the impact of financial hardship on HRQOL.

Race, financial hardship, and limiting care due to cost in a diverse cohort of cancer survivors.

PURPOSE: Estimate prevalence of types of cancer-related financial hardship by race and test whether they are associated with limiting care due to cost. METHODS: We used data from 994 participants (411 white, 583 African American) in a hospital-based cohort study of survivors diagnosed with breast, colorectal, lung, or prostate cancer since January 1, 2013. Financial hardship included decreased income, borrowing money, cancer-related debt, and accessing assets to pay for cancer care. Limiting care included skipping doses of prescribed medication, refusing treatment, or not seeing a doctor when needed due to cost. Logistic regression models controlled for sociodemographic factors. RESULTS: More African American than white survivors reported financial hardship (50.3% vs. 41.0%, p = 0.005) and limiting care (20.0% vs. 14.2%, p = 0.019). More white than African American survivors reported utilizing assets (9.3% vs. 4.8%, p = 0.006), while more African American survivors reported cancer-related debt (30.5% vs. 18.5%, p < 0.001). Survivors who experienced financial hardship were 4.4 (95% CI: 2.9, 6.6) times as likely to limit care as those who did not. Borrowing money, cancer-related debt, and decreased income were each independently associated with limiting care, while accessing assets was not. CONCLUSIONS: The prevalence of some forms of financial hardship differed by race, and these were differentially associated with limiting care due to cost. IMPLICATIONS FOR CANCER SURVIVORS: The ability to use assets to pay for cancer care may protect survivors from limiting care due to cost. This has differential impacts on white and African American survivors.