Greenberg, Alexandra J.

Abstract In the United States, ionizing radiation from medical imaging is estimated to account for nearly half of the total radiation exposure among the general population. While controversial, some estimates suggest thousands of future cancer cases can be attributed to radiation from medical imaging. With the advancement in medical technologies, understanding the health risks of radiation from medical imaging has become increasingly complex for the average cancer patient. This complexity may shape the public’s perceptions of the potential cancer risks of medical imaging tests, including as x-rays, mammography, and radioactive dyes. Due to the enumerable, often misleading, sources of information available to the average consumer regarding the effect of radiation on general health, trends in risk perception need to be assessed. To investigate the association between perceptions of radiation exposure from medical imaging and cancer risk, we analyzed data from the National Cancer Institute's Health Information National Trends Survey (HINTS 4, Cycle 2). HINTS is a probability-based nationally-representative survey which collects data on the American public’s knowledge, perception, and use of cancer- and health-related information since 2003. The data examined in the present study were collected between October 2012 and January 2013; (response rate = 39.97%). Bivariate analyses reveal individuals who perceive medical imaging radiation to be harmful to health are largely female, Hispanic, non-Hispanic Black, or non-Hispanic Asian, with less education and lower incomes. This perception is especially prevalent in individuals who self-report having a poor or fair general health and less confidence in their ability to take care of their own health. After adjusting for sociodemographic and health care factors, a significantly increased odds of believing radiation from medical imaging causes “some” or “a lot” of harm to health was found among those who have had a previous cancer diagnosis compared to those who did not (OR=1.67, 95%CI=1.18-2.35). Individuals who self-reported being Hispanic (OR=2.08, 95%CI=1.29-3.34), non-Hispanic Black (OR=1.54, 95%CI=1.09-2.19), and non-Hispanic Asian (OR=4.66, 95%CI=2.05-10.62) had significantly higher odds of perceiving “some” or ”a lot” of harm to health from medical imaging compared to non-Hispanic white counterparts. Our data reveal existing populations that perceive radiation from medical imaging is harmful to health. These perceptions, particularly among women and minorities, may affect the personal decisions of cancer care from individual patients. Future analyses may be useful to identify whether these perceptions alter health outcomes, especially related to frequency of patients declining cancer radiation therapy. Overall, understanding patient perceptions of radiation exposure and cancer risk may help guide conversation and education for physicians with their patients. Citation Format: Kekoa Taparra, Kay Pepin, Richard Moser, Bradford Hesse, Alexandra Greenberg. Examining sociodemographic disparities in perceptions of cancer risk from medical imaging radiation [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2017; 2017 Apr 1-5; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2017;77(13 Suppl):Abstract nr 4222. doi:10.1158/1538-7445.AM2017-4222

The contemporary healthcare system can help improve health literacy outcomes in two ways: first, by nurturing the skills and motivations needed for patients to be actively engaged in their own health and healthcare decisions; and, second, by creating a prepared and proactive healthcare system that adapts to patients’ capacities and needs in efficacious ways. In 2001, the National Cancer Institute launched the Health Information National Trends Survey (HINTS) as a way for researchers and planners to understand how the public is interacting with a rapidly changing health information environment. Original iterations of the HINTS national probability sampling strategies took place on a biennial basis, but in subsequent years the protocol moved to a yearly administration. This yields a rich resource of cross-sectional, national surveillance data to evaluate for trends across and within vulnerable populations. Sixteen studies are presented from the published literature to illustrate how HINTS data were used to explore constructs of direct interest to health literacy researchers. Suggestions are given for how this ongoing public surveillance mechanism can be used: (a) to provide a sentinel view of how the public is interacting with information in the environment to address their health needs; (b) to generate research questions and hypotheses for further exploration using complementary methodologies; and (c) to explore the diffusion of new health communication channels within and between segments of the national population.

AbstractPurposeThe increase in use of health information technologies (HIT) presents new opportunities for patient engagement and self‐management. Patients in rural areas stand to benefit especially from increased access to health care tools and electronic communication with providers. We assessed the adoption of 4 HIT tools over time by rural or urban residency.MethodsAnalyses were conducted using data from 7 iterations of the National Cancer Institute's Health Information National Trends Survey (HINTS; 2003‐2014). Rural/urban residency was based on the USDA's 2003 Rural‐Urban Continuum Codes. Outcomes of interest included managing personal health information online; whether providers maintain electronic health records (EHRs); e‐mailing health care providers; and purchasing medicine online. Bivariate analyses and logistic regression were used to assess relationships between geography and outcomes, controlling for sociodemographic characteristics.FindingsIn total, 6,043 (17.6%, weighted) of the 33,749 respondents across the 7 administrations of HINTS lived in rural areas. Rural participants were less likely to report regular access to Internet (OR = 0.70, 95% CI = 0.61‐0.80). Rural respondents were neither more nor less likely to report that their health care providers maintained EHRs than were urban respondents; however, they had decreased odds of managing personal health information online (OR = 0.59, 95% CI = 0.40‐0.78) and e‐mailing health care providers (OR = 0.62, 95% CI = 0.49‐0.77).ConclusionsThe digital divide between rural and urban residents extends to HIT. Additional investigation is needed to determine whether the decreased use of HIT may be due to lack of Internet connectivity or awareness of these tools.

Abstract The increasing adoption of electronic health records (EHRs) in the United States, spurred largely by the Centers for Medicare and Medicaid's EHR Meaningful Use Incentive Program, has potential to increase patient engagement and improve quality of healthcare delivered, especially for those diagnosed with cancer or other chronic conditions. Meaningful Use Stage 2 criteria require that providers give patients the ability to view, download and transmit their medical records; this is of particular importance for cancer patients, whose care is often delivered by teams of different specialists and for whom accurate communication of medical and treatment history between patients and providers is critical. To investigate whether there is a difference in patient access to and utilization of EHRs based on history of cancer diagnosis, we analyzed data from the National Cancer Institute's Health Information National Trends Survey (HINTS 4, Cycle 4). The survey was fielded between July and November 2014 via postal mail; 3,370 complete surveys were returned (response rate = 34.4%). Of the respondents, 6.4% reported having a prior diagnosis of a cancer other than non-melanoma skin cancer. Among those with a self-reported history of cancer, 48.2% reported being offered access to their EHRs and 30.8% accessed their EHRs at least once, compared with those who did not have cancer (41.8% and 27.2%, respectively; p > 0.05). After adjusting for sociodemographic and healthcare-related characteristics, no significant difference was found in the odds of being offered EHR access based on cancer diagnosis status. Those with a history of cancer had a statistically significantly higher odds of accessing their EHRs at least once compared to those without a diagnosis of cancer after adjustment, (OR = 1.75, 95% CI = 1.08-2.81, p = 0.02). Other significant predictive factors included in the model were age, education, health insurance, having a regular provider, and internet access (p < 0.05). A borderline association was also seen between a previous cancer diagnosis and increased frequency of EHR access (p = 0.08). These findings suggest that, if offered access to their records, those with a diagnosis of cancer have higher odds of using their EHRs; further investigation is needed to determine how patients are using EHRs to help manage their care, the impact of this use on cancer-specific outcomes, and associations with quality of care. Citation Format: Alexandra J. Greenberg, Angela Falisi, Lila J. Finney Rutten, Wen-Ying Sylvia Chou, Richard P. Moser, Bradford W. Hesse. Cancer diagnoses and patient use of electronic health records: results from the health information national trends survey. [abstract]. In: Proceedings of the 107th Annual Meeting of the American Association for Cancer Research; 2016 Apr 16-20; New Orleans, LA. Philadelphia (PA): AACR; Cancer Res 2016;76(14 Suppl):Abstract nr 2573.

Abstract Background: Genome wide association studies (GWAS) have recently identified 8 loci identified with multiple myeloma (MM) susceptibility. We hypothesized that germ line genetic variants may also affect MM progression. We performed the first GWAS of MM survival, by conducting a meta-analysis of two existing studies at University of California San Francisco (UCSF) and the Mayo Clinic, and replicating findings in the International Multiple Myeloma rESEarch (IMMEnSE) consortium. Methods: The UCSF study included 353 MM patients genotyped on an Illumina Omni5 and Illumina 660 array. The Mayo clinic study included 239 MM patients genotyped on an Affymetrix 6.0 array. We imputed missing genotypes using the 1000 Genomes dataset and performed a GWAS for survival using proportional hazards models adjusting for age and gender and genetic ancestry using principal components analysis. We conducted a meta-analysis of the results from the two GWAS. We replicated the top SNPs in the IMMEnSE cohort which included 772 patients with survival data from 7 European countries and one North American site. We used the dataset from Grundberg et al (Nat Genetics 2012) to test for an association between SNPs associated with survival and gene expression in immortalized lymphocytes. We used gene expression data from Zhan et al (Blood 2006) to analyze the association between expression and survival. Results: In meta-analysis, we found a genome wide significant association between SNPs on a region at 16p13 and survival (rs72773978; p=2.9x10e-10). Patients with the minor allele were at increased risk for mortality (HR 2.73; 95% CI: 1.99 - 3.73). The top associated SNPs were all in strong linkage disequilibrium and were centered over the gene FOPNL. We replicated the association in the IMMEnSE cohort and found a significant association between the top SNP from the discovery dataset (rs72773978 p=0.037). We used previously published data to determine the association between gene expression and the top associated SNPs from the GWAS. The top SNP (rs72773978) was not in previously published eQTL databases, so we used rs7201759 which was also associated with survival in our data (p=3.8x10e-10) as a proxy. The minor allele for this SNP was associated with increased levels of expression of FOPNL (p=9x10e-5), but not with expression of any other genes within a 1 megabase region. Finally, we also observed an association between increased expression of FOPNL and shorter survival (HR: 2.62 per standard deviation.; 95% CI: 1.08 - 6.32). Conclusion: Germ line variants at 16p13 near the FOPNL gene are associated with survival among MM patients. FOPNL is thought to be involved in centrosomal function, and centrosomal activity has previously been associated with survival in MM patients. Our results support this previous observation. Furthermore, they suggest that germ line variants could also be useful in assessing prognosis for patients with MM. Citation Format: Elad Ziv, Eric Dean, Donglei Hu, Alessandro Martino, Daniel Serie, Daniele Campa, Blake Aftab, Paige Bracci, Gabriele Buda, Jennifer Caswell, Charles Dumontet, Marek Dudziński, Laura Fejerman, Alexandra Greenberg, Scott Hunstman, Artur Jurczyszyn, Krzysztof Jamroziak, Shaji Kumar, Herlander Marques, Thomas Martin, Joaquin Martinez-Lopez, Vincent Rajkumar, Juan Sainz, Annette Juul Vangsted, Marzena Watek, Jeffrey Wolf, Susan Slager, Federico Canzian, Celine Vachon. Genome wide association study identifies variants at 16p13 associated with survival in multiple myeloma patients. [abstract]. In: Proceedings of the 105th Annual Meeting of the American Association for Cancer Research; 2014 Apr 5-9; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2014;74(19 Suppl):Abstract nr 5078. doi:10.1158/1538-7445.AM2014-5078

Abstract The incidence of multiple myeloma (MM) is twice as high in blacks compared with whites. MM consists of several different cytogenetic subtypes, with differing presentations, response to therapy, and prognosis. The studies that have characterized the distribution of the primary cytogenetic abnormalities by fluorescence in-situ hybridization (FISH) testing have been primarily conducted in white populations, and more data are needed on whether the distribution of these cytogenetic abnormalities differs in black compared with white MM patients, and to determine if the increased prevalence of MM in blacks is related to specific subtypes of the disease. In this multi-center study, we examined four common clinically assessed cytogenetic subtypes (t(11;14), t(4;14), del13q, and del17p) at time of MM diagnosis in 245 black patients from 3 clinics who had prior FISH testing available in medical records. We compared the prevalence of these subtypes with our previously characterized Mayo Clinic cohort which was all Caucasian (n=484). The t(11;14) translocation was seen in 9 of 245 (4%) black patients with MM; this was significantly lower than the rate of t(11;14) translocations seen in white patients from Mayo Clinic (18%), p < 0.0001). In contrast to t(11;14), the prevalence of the t(4;14) translocation across the two groups was similar (p= 0.92). We conclude that the prevalence of t(11;14) translocation is significantly lower in blacks with myeloma compared with whites. Our findings suggest that the distribution of cytogenetic subtypes found in MM may differ significantly by race, and further studies assessing differences in the prevalence of other primary cytogenetic abnormalities such as trisomies, t(6;14), t(14;16), and t(14;20) are needed. Furthermore, these results support the hypothesis previously put forth that there are several different subtypes of multiple myeloma that may be defined by the major cytogenetic translocations. Since these results differ from those previously reported (Baker et al 2013, Blood), we are conducting further analyses of these data to examine possible factors that could account for the differential association of translocation by race, including probes used. Citation Format: Alexandra Joelle Greenberg, Sunita Philip, Agne Paner, Sylvia Velinova, Ashraf Badros, Rosalind Catchatorian, Dirk Larson, Rhett Ketterling, Robert A. Kyle, Shaji Kumar, Celine M. Vachon, S. Vincent Rajkumar. Evidence of decreased prevalence of the t(11;14) translocation in black patients with multiple myeloma: A multi-center study. [abstract]. In: Proceedings of the 105th Annual Meeting of the American Association for Cancer Research; 2014 Apr 5-9; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2014;74(19 Suppl):Abstract nr 272. doi:10.1158/1538-7445.AM2014-272

Abstract Objective To determine the prognosis of patients with non‐secretory myeloma. Methods We studied 124 patients diagnosed with multiple myeloma who had no monoclonal protein detected on serum and urine immunofixation at diagnosis and on all subsequent follow‐up testing (non‐secretory myeloma). The overall survival ( OS ) of patients with non‐secretory myeloma was compared with 6953 patients with typical myeloma seen during the same time period in whom a monoclonal protein was detected at the time of diagnosis. Results One hundred and twenty‐four patients met criteria for non‐secretory multiple myeloma. The median follow‐up was 102 months (range, 1–204 months). The median progression‐free survival with initial therapy was 28.6 months, and the median OS was 49.3 months. There was a significant improvement in OS since 2001; median survival 43.8 months (prior to 2001) vs. 99.2 months (2001–2012), P < 0.001. OS was superior in patients with a normal baseline FLC ratio ( n = 10) compared to patients with an abnormal ratio ( n = 19), medians not reached in both groups. Prior to 2001, OS was similar in non‐secretory myeloma ( n = 86) and secretory myeloma ( n = 4011), median 3.6 vs. 3.5 yr, respectively, P = 0.63. However, among patients diagnosed between 2001 and 2012, OS was superior in non‐secretory myeloma ( n = 36) compared to secretory myeloma ( n = 2942), median 8.3 vs. 5.4 yr, respectively, P = 0.03. Conclusions Non‐secretory myeloma is an uncommon subtype of multiple myeloma. In the last decade, there has been an improvement in the survival of non‐secretory myeloma and appears superior to secretory myeloma.