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Background: Efficient measurement of the receipt of cancer screening has been attempted with electronic health records (EHRs), but EHRs are commonly implemented within a single health care setting. However, health information exchange (HIE) includes EHR data from multiple health care systems and settings, thereby providing a more population-based measurement approach. In this study, we set out to understand the value of statewide HIE data in comparison to survey self-report (SR) to measure population-based cancer screening. Methods: A statewide survey was conducted among residents in Indiana who had been seen at an ambulatory or inpatient clinical setting in the past year. Measured cancer screening tests included Colonoscopy, Fecal Immunochemical Test (FIT) for colorectal cancer, Human Papilloma Virus (HPV) and Pap tests for cervical cancer, and Mammogram for breast cancer. For each screening test, the self-reported response for receipt of the screening (yes/no) and ‘time since last screening’ were compared with the corresponding information from patient HIE to evaluate the association between the two measures. Results: Percent agreement of HIE and self-report of screening receipt ranged from 59% to 81%, with the Gwet’s AC ranging from 0.24-0.76, indicating a fair to substantial concordance. For the time since receipt of last screening test, Percent agreement ranged from 71% to 93% along with the Gwet’s AC ranging from 0.47-0.91. In comparison with SR data, HIE data provided relatively more additional information about laboratory-based tests: FIT (15% HIE alone vs. 4% SR alone) and HPV tests (24% HIE alone vs. 12% SR alone) and less additional information about procedures: Colonoscopy (7% HIE alone vs. 34% SR alone), Pap test (10% HIE alone vs. 27% SR alone), or Mammography (8% HIE alone vs. 20% SR alone). Conclusion: Studies that use a single data source should consider the type of cancer screening test to choose the optimal data collection method. HIE and self-report both provided unique information in measuring cancer screening, and the most robust measurement approach involves collecting screening information from both HIE and patient self-report.

Purpose: Improving understanding of behaviors that increase or reduce cancer risk for different Hispanic groups is a public health priority; such knowledge is sparse in new gateway immigration locations such as Indiana. The aims of this study were to: 1) describe cancer beliefs and cancer preventive/risk reduction behaviors (physical activity, tobacco, and alcohol use) among Hispanic adults; 2) examine differences in cancer beliefs and preventive behaviors by country of birth, socioeconomic status, and area of residence (urban vs. rural); and 3) determine predictors of engagement in cancer prevention and risk reduction behaviors in this population.Methods: A cross-sectional online survey targeted adult Indiana residents who identified as Latino, Hispanic, or Spanish recruited using Facebook-targeted advertising. Complete survey data from 1520 respondents were analyzed using descriptive, unadjusted, and adjusted models. Results: The majority of respondents believed they were unlikely to get cancer but held many other fatalistic beliefs about cancer. Only 35.6% of respondents had received the HPV vaccine, 37.6% reported they were currently smoking cigarettes, and 64% reported occasional or frequent drinking of alcohol. Respondents spent an average of 3.55 days per week engaged in moderate exercise. Differences were observed by country of birth, income, and education but not by rural residence status. Predictors of cancer risk/risk reduction behaviors were identified. Conclusion: The Hispanic population in Indiana is diverse and effective interventions for cancer prevention should be culturally targeted based on country of birth and individually tailored based on cancer-related beliefs.

Background The rising cost of cancer treatment has been linked to higher bankruptcy rates and worse mortality among patients with cancer. The objective of this study was to identify the characteristics of insured patients with breast cancer who underwent surgery and filed for bankruptcy. Methods Insured patients with breast cancer who underwent surgery were identified in the Indiana State Cancer Registry (ISCR) from January 1, 2008 to December 31, 2014. Patients who filed for Chapter 7 or 13 bankruptcy in the Public Access to Courts Electronic Records (PACER) database were linked to patients in the ISCR. The cohort was divided into 2 groups: no bankruptcy (NB) and bankruptcy after diagnosis (BAD). Bivariate analysis and a logistic regression model were used to identify patients who were at increased risk of filing for bankruptcy after their diagnosis. Results Of 23,012 patients, 207 (0.9%) filed for bankruptcy after diagnosis and 22,805 (99.1%) did not file for bankruptcy. The patients who filed for bankruptcy after diagnosis were younger (BAD vs NB: median age, 53 years [interquartile range (IQR), 46-61 years] vs 62 years [IQR, 52-71 years], non-White (BAD vs NB, 20.5% vs 8.5%), and lived in lower income neighborhoods (BAD vs NB: median annual income, $50,869 [IQR, $41,051-$61,150] vs $52,522 [IQR, $41,356-$64,915]). On multivariable analysis, younger age (aged ≤40 years: odds ratio [OR], 5.41; 95% CI, 2.8-12.31; aged 41-64 years: OR, 2.65; 95% CI, 1.33-5.12; aged ≥65 years, reference category) and non-White race (non-White: OR, 2.43; 95% CI, 1.54-3.83; White, reference category) were associated with filing for bankruptcy after diagnosis CONCLUSIONS: Younger age and non-White race are associated with an increased risk of filing for bankruptcy after diagnosis among insured patients who undergo surgery for breast cancer. Additional steps should be taken to screen and address the financial vulnerability of these patients at treatment initiation.

The Institute of Medicine (IOM) and the American College of Surgeons Commission on Cancer (CoC) recommend a clear and effectively explained comprehensive survivorship care plan (SCP) be given to all cancer survivors. The objective of this study is to understand the relationship between social determinants of health (SDOH) and self-reported receipt of SCP by cancer survivors in the USA. We analyzed an adult population of cancer survivors in the 2016 Behavioral Risk Factor Surveillance System’s (BRFSS) Survivorship modules. Weighted multivariable logistic regression was used to analyze the association of SDOH and reported receipt of SCP. There were 7061 cancer patients eligible for an SCP. The probability of reporting receipt of SCP decreased with lower educational achievement (high school/some college: AOR = 0.82, 95% CI: 0.70–0.97, p = 0.02

The Institute of Medicine recommends that cancer patients receive survivorship care plans (SCP) summarizing information important to the individual’s long-term care. The various components of SCPs have varying levels of evidence supporting their impact. We surveyed medical oncologists to better understand how they perceived the relative value of different SCP components. Medical oncologists caring for patients in diverse US practice settings were surveyed (357 respondents; participation rate 52.9%) about their perceptions of the usefulness of various components of SCPs to both patients and primary care physicians (PCPs). Oncologists perceived treatment summaries as “very useful” for PCPs but were less likely to perceive them as “very useful” for patients (55% vs. 40%, p

BACKGROUND: Although growing, the prevalence of the use of health information technology (HIT) by patients to communicate with their providers is not well understood on the population level, nor whether patients are communicating with their providers about their use of HIT. OBJECTIVE: To understand whether patients are communicating with their providers about HIT use and the patient characteristics associated with the communication. DESIGN: Cross-sectional, self-administered survey of a sample of patients across the state of Indiana. PARTICIPANTS: Nine hundred seventy adult participants from across Indiana, 54% female and 79.5% white. MAIN MEASURES: The survey included sections assessing health information-seeking behavior, use of health information technology, and discussions with doctors about the use of HIT. KEY RESULTS: The survey had a 12% response rate. Sixty-three percent of respondent reported going to the Internet as the first source when seeking health information, while only 19% of respondent reported their doctor was their first source. When communicating with doctors electronically, 31% reported using an electronic health record messaging system, 24% used email, and 18% used text messaging. Only 39% of respondents reported having had any conversation about HIT use with their providers. CONCLUSIONS: There remain many unmet opportunities for patients and providers to communicate about HIT use. More guidance for patients and care teams may both help facilitate these conversations and promote optimal use, such as recommendations to ask simple clarification questions and minimize inefficient, synchronous communication when unnecessary. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s11606-020-05903-1) contains supplementary material, which is available to authorized users.

The purpose of this study was to examine differences in presentation, surgical management, and mortality among breast cancer patients in the National Cancer Database (NCDB) based on area of residence. The NCDB was queried for women with a diagnosis of breast cancer from 1 January 2004–31 December 2015. The data were divided by metropolitan (large, medium, small) and non-metropolitan (urban, rural) status. Cancer stage increased with rurality (p

PURPOSE: Survivorship care plans (SCPs) serve to communicate critical information needed for cancer survivors’ long-term follow-up care. The extent to which SCPs are tailored to meet the specific needs of underserved patient populations is understudied. To fill this gap, this study aimed to assess the content and communication appropriateness of SCPs collected from diverse health care settings. METHODS: We analyzed collected SCPs (n=16) for concordance with Institute of Medicine (IOM) recommendations for SCP content and for communication appropriateness using the Suitability Assessment of Materials (SAM) instrument. RESULTS: All plans failed to incorporate all IOM criteria, with the majority of plans (n=11) incorporating less than 60% of recommended content. The average reading grade level of all the plans was 14, and only one plan received a superior rating for cultural appropriateness. CONCLUSION: There is significant variation in the format and content of SCPs used in diverse hospital settings and most plans are not written at an appropriate reading grade level nor tailored for underserved and/or minority patient populations. IMPLICATIONS FOR CANCER SURVIVORS: Co-designing SCPs with diverse patient populations is crucial to ensure that these documents are meeting the needs and preferences of all cancer survivors.

Background: Rural populations experience a disproportionate cancer burden relative to urban populations. One possibility is that rural populations are more likely to hold counterproductive cancer beliefs such as fatalism and information overload that undermine prevention and screening behaviors. Methods: Between 2016 and 2020, 12 U.S. cancer centers surveyed adults in their service areas using online and in-person survey instruments. Participants (N = 10,362) were designated as rural (n = 3,821) or urban (n = 6,541). All participants were 18 and older (M = 56.97, SD = 16.55), predominately non-Hispanic White (81%), and female (57%). Participants completed three items measuring cancer fatalism (“It seems like everything causes cancer,” “There's not much you can do to lower your chances of getting cancer,” and “When I think about cancer, I automatically think about death”) and one item measuring cancer information overload (“There are so many different recommendations about preventing cancer, it's hard to know which ones to follow”). Results: Compared with urban residents, rural residents were more likely to believe that (i) everything causes cancer (OR = 1.29; 95% CI, 1.17–1.43); (ii) prevention is not possible (OR = 1.34; 95% CI, 1.19–1.51); and (iii) there are too many different recommendations about cancer prevention (OR = 1.26; 95% CI, 1.13–1.41), and cancer is always fatal (OR = 1.21; 95% CI, 1.11–1.33). Conclusions: Compared with their urban counterparts, rural populations exhibited higher levels of cancer fatalism and cancer information overload. Impact: Future interventions targeting rural populations should account for higher levels of fatalism and information overload.

BACKGROUND There are currently an estimated 1.5 million individuals living in the United States (US) with colorectal cancer (CRC), and although the five-year survival rate has increased, survivors are at risk for recurrence, particularly within the first 2-3 post-treatment. National guidelines recommend continued surveillance post-resection, in order to identify recurrence early on. Adherence among survivors ranges from 49%-94%. Novel interventions are needed to increase CRC survivors’ knowledge and confidence in managing their cancer and thus increase adherence to follow-up surveillance. OBJECTIVE The objective of this study was to develop and test the feasibility and efficacy of a web-based personal health record (PHR) to increase surveillance adherence among CRC survivors, with patient beliefs about surveillance as secondary outcomes. METHODS A pre- and post-intervention feasibility trial was conducted testing the efficacy of the Colorectal Cancer Survivor (CRCS)-PHR, which had been previously developed using an iterative, user-centered design approach. The CRCS-PHR includes surveillance guidelines, treatment tracking, potential treatment toxicities, as well as a journaling tab and communities to interact with other CRC survivors. A total of 28 stage I-III CRC survivors (9 colon, 18 rectal, 1 unknown) were recruited from an academic medical center in the Midwest US. At enrollment, patient demographics and cancer characteristics were gathered via medical record audit. Following enrollment, patients completed surveys at baseline and 6 months post-intervention asking about adherence to colonoscopy, computed tomography (CT) scan, and carcinoembryonic antigen (CEA) and beliefs about surveillance (barriers, benefits, self-efficacy, and knowledge). Paired t-test analyses were used to compare pre- and post-intervention ratings for each of the four patient beliefs categories and surveillance adherence. RESULTS The average age of the sample was 58 years old, with 57% males and the majority being married and employed full time. We observed a significant increase in adherence to colonoscopy (pre: 52% vs. post: 86%, p CONCLUSIONS This feasibility study lays the groundwork for continued development of the CRCS-PHR to increase CRC surveillance. Patient-centered technologies, such as the CRCS-PHR, represent an important potential approach to improving the receipt of guideline-concordant care and follow-up surveillance, not just for CRC survivors. Researchers should continue to develop patient-centered health technologies with clinician implementation in mind to increase patient self-efficacy and surveillance adherence.

Background Prior studies, generally conducted at single centers with small sample sizes, found that individuals with cancer experience more severe outcomes due to COVID-19, caused by SARS-CoV-2 infection. Although early examinations revealed greater risk of severe outcomes for patients with cancer, the magnitude of the increased risk remains unclear. Furthermore, prior studies were not typically performed using population-level data, especially those in the United States. Given robust prevention measures (eg, vaccines) are available for populations, examining the increased risk of patients with cancer due to SARS-CoV-2 infection using robust population-level analyses of electronic medical records is warranted. Objective The aim of this paper is to evaluate the association between SARS-CoV-2 infection and all-cause mortality among recently diagnosed adults with cancer. Methods We conducted a retrospective cohort study of newly diagnosed adults with cancer between January 1, 2019, and December 31, 2020, using electronic health records linked to a statewide SARS-CoV-2 testing database. The primary outcome was all-cause mortality. We used the Kaplan-Meier estimator to estimate survival during the COVID-19 period (January 15, 2020, to December 31, 2020). We further modeled SARS-CoV-2 infection as a time-dependent exposure (immortal time bias) in a multivariable Cox proportional hazards model adjusting for clinical and demographic variables to estimate the hazard ratios (HRs) among newly diagnosed adults with cancer. Sensitivity analyses were conducted using the above methods among individuals with cancer-staging information. Results During the study period, 41,924 adults were identified with newly diagnosed cancer, of which 2894 (6.9%) tested positive for SARS-CoV-2. The population consisted of White (n=32,867, 78.4%), Black (n=2671, 6.4%), Hispanic (n=832, 2.0%), and other (n=5554, 13.2%) racial backgrounds, with both male (n=21,354, 50.9%) and female (n=20,570, 49.1%) individuals. In the COVID-19 period analysis, after adjusting for age, sex, race or ethnicity, comorbidities, cancer type, and region, the risk of death increased by 91% (adjusted HR 1.91; 95% CI 1.76-2.09) compared to the pre–COVID-19 period (January 1, 2019, to January 14, 2020) after adjusting for other covariates. In the adjusted time-dependent analysis, SARS-CoV-2 infection was associated with an increase in all-cause mortality (adjusted HR 6.91; 95% CI 6.06-7.89). Mortality increased 2.5 times among adults aged 65 years and older (adjusted HR 2.74; 95% CI 2.26-3.31) compared to adults 18-44 years old, among male (adjusted HR 1.23; 95% CI 1.14-1.32) compared to female individuals, and those with ≥2 chronic conditions (adjusted HR 2.12; 95% CI 1.94-2.31) compared to those with no comorbidities. Risk of mortality was 9% higher in the rural population (adjusted HR 1.09; 95% CI 1.01-1.18) compared to adult urban residents. Conclusions The findings highlight increased risk of death is associated with SARS-CoV-2 infection among patients with a recent diagnosis of cancer. Elevated risk underscores the importance of adhering to social distancing, mask adherence, vaccination, and regular testing among the adult cancer population.

Background The COVID-19 pandemic has highlighted the inability of health systems to leverage existing system infrastructure in order to rapidly develop and apply broad analytical tools that could inform state- and national-level policymaking, as well as patient care delivery in hospital settings. The COVID-19 pandemic has also led to highlighted systemic disparities in health outcomes and access to care based on race or ethnicity, gender, income-level, and urban-rural divide. Although the United States seems to be recovering from the COVID-19 pandemic owing to widespread vaccination efforts and increased public awareness, there is an urgent need to address the aforementioned challenges. Objective This study aims to inform the feasibility of leveraging broad, statewide datasets for population health–driven decision-making by developing robust analytical models that predict COVID-19–related health care resource utilization across patients served by Indiana’s statewide Health Information Exchange. Methods We leveraged comprehensive datasets obtained from the Indiana Network for Patient Care to train decision forest-based models that can predict patient-level need of health care resource utilization. To assess these models for potential biases, we tested model performance against subpopulations stratified by age, race or ethnicity, gender, and residence (urban vs rural). Results For model development, we identified a cohort of 96,026 patients from across 957 zip codes in Indiana, United States. We trained the decision models that predicted health care resource utilization by using approximately 100 of the most impactful features from a total of 1172 features created. Each model and stratified subpopulation under test reported precision scores >70%, accuracy and area under the receiver operating curve scores >80%, and sensitivity scores approximately >90%. We noted statistically significant variations in model performance across stratified subpopulations identified by age, race or ethnicity, gender, and residence (urban vs rural). Conclusions This study presents the possibility of developing decision models capable of predicting patient-level health care resource utilization across a broad, statewide region with considerable predictive performance. However, our models present statistically significant variations in performance across stratified subpopulations of interest. Further efforts are necessary to identify root causes of these biases and to rectify them.

PURPOSE: For many patients with cancer, the frequency of surveillance after primary treatment depends on the risk for cancer recurrence or progression. Lack of risk-aligned surveillance means too many unnecessary surveillance procedures for low-risk patients and not enough for high-risk patients. Using bladder cancer as an example, we examined whether practice determinants differ between Department of Veterans Affairs sites where risk-aligned surveillance was more (risk-aligned sites) or less common (need improvement sites). METHODS: We used our prior quantitative data to identify two risk-aligned sites and four need improvement sites. We performed semistructured interviews with 40 Veterans Affairs staff guided by the Tailored Implementation for Chronic Diseases framework that were deductively coded. We integrated quantitative data (risk-aligned site v need improvement site) and qualitative data from interviews, cross-tabulating salient determinants by site type. RESULTS: There were 14 participants from risk-aligned sites and 26 participants from need improvement sites. Irrespective of site type, we found a lack of knowledge on guideline recommendations. Additional salient determinants at need improvement sites were a lack of resources (“the next available without overbooking is probably seven to eight weeks out”) and an absence of routines to incorporate risk-aligned surveillance (“I have my own guidelines that I've been using for 35 years”). CONCLUSION: Knowledge, resources, and lack of routines were salient barriers to risk-aligned bladder cancer surveillance. Implementation strategies addressing knowledge and resources can likely contribute to more risk-aligned surveillance. In addition, reminders for providers to incorporate risk into their surveillance plans may improve their routines.

PURPOSE: Cancer screening uptake differs between groups in ways that cannot be explained by socioeconomic status alone. This study examined associations between material, psychosocial, and behavioral aspects of financial hardship and cancer screening behaviors. METHODS: Surveys were mailed to 7,979 people ages 18–75 who were seen in the statewide health system in Indiana. Participants reported SES, feelings about finances, and whether they had to forgo medical care due to cost. This was compared to uptake of mammogram, colonoscopy/sigmoidoscopy, and Pap testing in best-fit multivariable logistic regression analyses controlling for demographic and healthcare characteristics. RESULTS: 970 surveys were returned, the majority of respondents were female (54%), non-Hispanic White (75%), and over 50 years old (76%). 15% reported forgoing medical care due to cost; this barrier was higher among Black than White participants (24% vs. 13%; p=0.001). In a best fit regression model for colonoscopy/sigmoidoscopy, those who reported they had to forgo medical care due to cost had lower odds of screening (aOR=0.41; 95%CI=0.22–0.74). Forgoing medical care due to cost was not significantly associated with Pap testing in bivariate analyses. For mammogram, forgoing medical care due to cost was significant in bivariate analyses (OR=0.44; 95% CI=0.22–0.88), but was not significant in the multivariable model. CONCLUSION: Associations between financial hardship and cancer screening suggest the need to reduce barriers to cancer screening even among patients who have access to healthcare. Future research should explore barriers related to both healthcare and personal costs.

BACKGROUND The COVID-19 pandemic has highlighted the inability of health systems to leverage existing system infrastructure in order to rapidly develop and apply broad analytical tools that could inform state- and national-level policymaking, as well as patient care delivery in hospital settings. The COVID-19 pandemic has also led to highlighted systemic disparities in health outcomes and access to care based on race or ethnicity, gender, income-level, and urban-rural divide. Although the United States seems to be recovering from the COVID-19 pandemic owing to widespread vaccination efforts and increased public awareness, there is an urgent need to address the aforementioned challenges. OBJECTIVE This study aims to inform the feasibility of leveraging broad, statewide datasets for population health–driven decision-making by developing robust analytical models that predict COVID-19–related health care resource utilization across patients served by Indiana’s statewide Health Information Exchange. METHODS We leveraged comprehensive datasets obtained from the Indiana Network for Patient Care to train decision forest-based models that can predict patient-level need of health care resource utilization. To assess these models for potential biases, we tested model performance against subpopulations stratified by age, race or ethnicity, gender, and residence (urban vs rural). RESULTS For model development, we identified a cohort of 96,026 patients from across 957 zip codes in Indiana, United States. We trained the decision models that predicted health care resource utilization by using approximately 100 of the most impactful features from a total of 1172 features created. Each model and stratified subpopulation under test reported precision scores >70%, accuracy and area under the receiver operating curve scores >80%, and sensitivity scores approximately >90%. We noted statistically significant variations in model performance across stratified subpopulations identified by age, race or ethnicity, gender, and residence (urban vs rural). CONCLUSIONS This study presents the possibility of developing decision models capable of predicting patient-level health care resource utilization across a broad, statewide region with considerable predictive performance. However, our models present statistically significant variations in performance across stratified subpopulations of interest. Further efforts are necessary to identify root causes of these biases and to rectify them.

Objective The 5 SPADE (sleep, pain, anxiety, depression, and low energy/fatigue) symptoms are among the most prevalent and disabling symptoms in clinical practice. This study evaluates the minimally important difference (MID) of Patient-Reported Outcomes Measurement Information System (PROMIS) measures and their correspondence with other brief measures to assess SPADE symptoms. Study Design and Setting Three hundred primary care patients completed a 4-item PROMIS scale, a numeric rating scale (NRS), and a non-PROMIS legacy scale for each of the 5 SPADE symptoms. Optimal NRS cutpoints were examined, and cross-walk units for converting legacy measure scores to PROMIS scores were determined. PROMIS scores corresponding to standard deviation (SD) and standard error of measurement (SEM) changes in legacy scores were used to estimate MID. Results At an NRS ≥5, the mean PROMIS T-score exceeded 55 (the operational threshold for a clinically meaningful symptom) for each SPADE symptom. Correlations were high (0.70–0.86) between each PROMIS scale and its corresponding non-PROMIS legacy scale. Changes in non-PROMIS legacy scale scores of 0.35 SD and 1 SEM corresponded to mean PROMIS T-scores of 2.92 and 3.05 across the 5 SPADE symptoms, with changes in 0.2 and 0.5 SD corresponding to mean PROMIS T-scores of 1.67 and 4.16. Conclusion A 2-step screening process for SPADE symptoms might use single-item NRS scores, proceeding to PROMIS scales for NRS scores ≥5. A PROMIS T-score change of three points represents a reasonable MID estimate, with two to four points approximating lower and upper bounds.

Background The incidence of papillary thyroid cancer has increased substantially during the past 15 years, which is likely related to an increased detection of small, nonlethal cancers. Studies have shown that patients may have a similar prognosis when undergoing less aggressive surgical intervention, such as thyroid lobectomy. The objective of this study is to determine whether surgical treatment patterns for papillary thyroid cancer have changed during the past 15 years. Methods We performed a retrospective cohort study evaluating changes in the incidence and proportion of total thyroidectomy versus thyroid lobectomy for histologically confirmed papillary thyroid cancers, using the National Cancer Institute Surveillance, Epidemiology, and End Results cancer registries between 2000 and 2014. Results During the study period, 44,537 patients underwent surgical treatment for papillary thyroid cancer, of which 77% were female and 81.3% were white. The incidence of papillary thyroid cancer more than doubled: from 6.2 (5.9–6.5) to 13.0 (12.5–13.4) per 100,000. The proportion of total thyroidectomy among all papillary cases increased from 78.16% in 2000 to 85.67% in 2014, and the proportion of thyroid lobectomy dropped from 16.62% to 11.41%. When stratified by tumor size, we observed a sustained and increasing gap in the proportions of total thyroidectomy and thyroid lobectomy. Conclusion The incidence of total thyroidectomy has not decreased despite recommendations encouraging consideration of lobectomy for patients with small papillary thyroid cancers. Although these findings could be attributed to the lag between scientific evidence and clinical practice, further work is warranted to explore any additional patient and provider factors that may explain this lack of change.

Background: This statewide survey examined differences in cancer-related knowledge, beliefs, and behaviors between racial and socioeconomic groups in select counties in Indiana. Methods: A stratified random sample of 7,979 people aged 18–75 who lived in one of 34 Indiana counties with higher cancer mortality rates than the state average, and were seen at least once in the past year in a statewide health system were mailed surveys. Results: Completed surveys were returned by 970 participants, yielding a 12% response rate. Black respondents were less likely to perceive they were at risk for cancer and less worried about getting cancer. Individuals most likely to perceive that they were unlikely to get cancer were more often black, with low incomes (less than $20,000) or high incomes ($50,000 or more), or less than a high school degree. Black women were greater than six times more likely to be adherent to cervical cancer screening. Higher income was associated with receiving a sigmoidoscopy in the last 5 years and a lung scan in the past year. Those with the highest incomes were more likely to engage in physical activity. Both income and education were inversely related to smoking. Conclusions: Socioeconomic and racial disparities were observed in health behaviors and receipt of cancer screening. Black individuals had less worry about cancer. Impact: Understanding populations for whom cancer disparities exist and geographic areas where the cancer burden is disproportionately high is essential to decision-making about research priorities and the use of public health resources.

Background This statewide survey sought to understand the adoption level of new health information and medical technologies, and whether these patterns differed between urban and rural populations. Methods A random sample of 7,979 people aged 18-75 years, stratified by rural status and race, who lived in 1 of 34 Indiana counties with high cancer mortality rates and were seen at least once in the past year in a statewide health system were surveyed. Results Completed surveys were returned by 970 participants. Rural patients were less likely than urban to use electronic health record messaging systems (28.3% vs 34.5%, P = .045) or any communication technology (43.0% vs 50.8%, P = .017). Rural patients were less likely to look for personal health information for someone else's medical record (11.0% vs 16.3%, P = .022), look-up test results (29.5% vs 38.3%, P = .005), or use any form of electronic medical record (EMR) access (57.5% vs 67.1%, P = .003). Rural differences in any use of communication technology or EMRs were no longer significant in adjusted models, while education and income were significantly associated. There was a trend in the higher use of low-dose computed tomography (CT) scan among rural patients (19.1% vs 14.4%, P = .057). No significant difference was present between rural and urban patients in the use of the human papilloma virus test (27.1% vs 26.6%, P = .880). Conclusions Differences in health information technology use between rural and urban populations may be moderated by social determinants. Lower adoption of new health information technologies (HITs) than medical technologies among rural, compared to urban, individuals may be due to lower levels of evidence supporting HITs.

Background There are currently an estimated 1.5 million individuals living in the United States with colorectal cancer (CRC), and although the 5-year survival rate has increased, survivors are at risk for recurrence, particularly within the first 2-3 years after treatment. National guidelines recommend continued surveillance after resection to identify recurrence early on. Adherence among survivors ranges from 23% to 94%. Novel interventions are needed to increase CRC survivors’ knowledge and confidence in managing their cancer and thus to increase adherence to follow-up surveillance. Objective The objective of this study is to develop and test the feasibility and efficacy of a stand-alone, web-based personal health record (PHR) to increase surveillance adherence among CRC survivors, with patient beliefs about surveillance as secondary outcomes. Methods A pre- and postintervention feasibility trial was conducted testing the efficacy of the colorectal cancer survivor (CRCS)–PHR, which had been previously developed using an iterative, user-centered design approach. Results The average age of the sample was 58 (SD 9.9) years, with 57% (16/28) male and the majority married (20/28, 71%) and employed full-time (15/28, 54%). We observed a significant increase in adherence to colonoscopy (before: 11/21, 52% vs after: 18/21, 86%; P=.005) and CEA (14/21, 67% vs 20/21, 95%; P=.01), as well as a slight increase in CT scans (14/21, 67% vs 18/21, 86%; P=.10). The only significant impact on secondary outcome (patient beliefs) was benefits of CEA test (P=.04), as most of the beliefs were high at baseline. Conclusions This feasibility study lays the groundwork for continued development of the CRCS-PHR to increase CRC surveillance. Patient-centered technologies, such as the CRCS-PHR, represent an important potential approach to improving the receipt of guideline-concordant care and follow-up surveillance, and not just for CRC survivors. Researchers should continue to develop patient-centered health technologies with clinician implementation in mind to increase patient self-efficacy and surveillance adherence.

OBJECTIVE: To examine the relationship between fear of cancer recurrence (FCR) and healthcare utilization among long-term breast cancer survivors (BCS). METHODS: In a cross-sectional survey study, 505 younger survivors (YS: ≤45 years) and 622 older survivors (OS: 55–70 years) 3–8 years from diagnosis completed a questionnaire assessing demographics, medical history, FCR, and healthcare utilization. Healthcare utilization consisted of breast cancer (BC) and non-BC-related routine and nonroutine utilization. RESULTS: YS had significantly higher FCR than OS (p < 0.01). Independent of age, FCR was significantly associated with all three types of BC-related utilization (p < 0.05). In the multivariate models, we found a significant, positive interaction effect between FCR and increased comorbidities on nonroutine BC appointments (p = 0.01) and BC-related emergency room visits (p = 0.03). Additionally, comorbidities were associated with non-BC-related utilization (p < 0.01), and nonwhites were more likely to utilize nonroutine resources, both BC and non-BC-related (p < 0.01). CONCLUSIONS: Increased FCR has been associated with hypervigilance among survivors and may lead to increased healthcare utilization. YS are at higher risk for increased FCR and psychosocial concerns, which may lead to overutilization. Providers should be aware that higher FCR may be related to increased use of healthcare resources and that these patients might be better served with supportive resources to increase quality of life and decrease inappropriate utilization. While this study provides increased evidence of the relationship between FCR and healthcare utilization, interventions are needed for survivors at risk to address unmet needs, especially as life expectancy increases among BCS.

The Institute of Medicine (IOM) and the American College of Surgeons Commission on Cancer (CoC) recommend a clear and effectively explained comprehensive survivorship care plan (SCP) be given to all cancer survivors. The objective of this study is to understand the relationship between social determinants of health (SDOH) and self-reported receipt of SCP by cancer survivors in the USA.We analyzed an adult population of cancer survivors in the 2016 Behavioral Risk Factor Surveillance System's (BRFSS) Survivorship modules. Weighted multivariable logistic regression was used to analyze the association of SDOH and reported receipt of SCP.There were 7061 cancer patients eligible for an SCP. The probability of reporting receipt of SCP decreased with lower educational achievement (high school/some college: AOR = 0.82, 95% CI: 0.70-0.97, p = 0.02; high school: AOR = 0.68, 95% CI: 0.47-0.97, p = 0.03) compared to those with at least one college degree. Additionally, being widowed/divorced/separated (widowed/divorced/separated: AOR = 0.72, 95% CI: 0.61-0.86, p 0.01 vs. married/cohabiting) and uninsured (uninsured: AOR = 0.52, 95% CI: 0.0.34-0.80, p 0.01 vs. insured) increased the odds of not receiving an SCP. Younger patients were more likely to receive an SCP than those over 65 (18-24 years: AOR = 6.62, 95% CI: 1.87-24.49, p 0.01 vs. 65+ years).Among cancer survivors, SDOH such as low educational achievement, widowed/divorced/separated marital status, and being uninsured were associated with a lower likelihood of receiving an SCP. Future studies should evaluate how omission of SCP in these patients influences the quality of care during the transition from oncologists to primary care.

BACKGROUND The US Department of Veterans Affairs (VA) seeks to achieve interoperability with other organizations, including non-VA community and regional health information exchanges (HIEs). OBJECTIVE This study aims to understand the perspectives of leaders involved in implementing information exchange between VA and non-VA providers via a community HIE. METHODS We interviewed operational, clinical, and information technology leaders at one VA facility and its community HIE partner. Respondents discussed their experiences with VA-HIE, including barriers and facilitators to implementation, and the associated impact on health care providers. Transcribed interviews were coded and analyzed using immersion-crystallization methods. RESULTS VA and community HIE leaders found training to be a key factor when implementing VA-HIE and worked cooperatively to provide several styles and locations of training. During recruitment, a high-touch approach was successfully used to enroll patients and overcome their resistance to opting in. Discussion with leaders revealed the high levels of complexity navigated by VA providers and staff to send and retrieve information. Part of the complexity stemmed from the interconnected web of information systems and human teams necessary to implement VA-HIE information sharing. These interrelationships must be effectively managed to guide organizational decision making. CONCLUSIONS Organizational leaders perceived information sharing to be of essential value in delivering high-quality, coordinated health care. The VA continues to increase access to outside care through the VA Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act. Along with this increase in non-VA medical care, there is a need for greater information sharing between VA and non-VA health care organizations. Insights by leaders into barriers and facilitators to VA-HIE can be applied by other national and regional networks that seek to achieve interoperability across health care delivery systems.

Background The US Department of Veterans Affairs (VA) seeks to achieve interoperability with other organizations, including non-VA community and regional health information exchanges (HIEs). Objective This study aims to understand the perspectives of leaders involved in implementing information exchange between VA and non-VA providers via a community HIE. Methods We interviewed operational, clinical, and information technology leaders at one VA facility and its community HIE partner. Respondents discussed their experiences with VA-HIE, including barriers and facilitators to implementation, and the associated impact on health care providers. Transcribed interviews were coded and analyzed using immersion-crystallization methods. Results VA and community HIE leaders found training to be a key factor when implementing VA-HIE and worked cooperatively to provide several styles and locations of training. During recruitment, a high-touch approach was successfully used to enroll patients and overcome their resistance to opting in. Discussion with leaders revealed the high levels of complexity navigated by VA providers and staff to send and retrieve information. Part of the complexity stemmed from the interconnected web of information systems and human teams necessary to implement VA-HIE information sharing. These interrelationships must be effectively managed to guide organizational decision making. Conclusions Organizational leaders perceived information sharing to be of essential value in delivering high-quality, coordinated health care. The VA continues to increase access to outside care through the VA Maintaining Internal Systems and Strengthening Integrated Outside Networks (MISSION) Act. Along with this increase in non-VA medical care, there is a need for greater information sharing between VA and non-VA health care organizations. Insights by leaders into barriers and facilitators to VA-HIE can be applied by other national and regional networks that seek to achieve interoperability across health care delivery systems.

Purpose The purpose of this study was to describe clinical outcomes of patients with temporary ostomies in 3 Veterans Health Administration hospitals. Design Retrospective descriptive study, secondary analysis. Sample and setting Veterans with temporary ostomies from 3 Veterans Health Administration hospitals who were enrolled in a previous study. The sample comprised 36 participants all were male. Their mean age was 67.05 ± 9.8 years (mean ± standard deviation). Twenty patients (55.6%) had ileostomies and 16 patients (44.4%) had colostomies. Methods This was a secondary analysis of data collected using medical record data. Variables examined included etiology for creation and type of ostomy, health-related quality of life, time to reversal, reasons for nonreversal, postoperative complications after reversal, and mortality in the follow-up period. Results Colorectal cancer and diverticular disease were the main reasons for temporary stoma formation. The reversal rate was 50%; the median time to reversal was 9 months in our sample; temporary ileostomies were reversed more often than temporary colostomies (P = .18). Comorbid conditions were identified as the main reason for nonreversal. Mortality was not significantly different between the reversal and nonreversal groups. No significant differences were reported with health-related quality-of-life parameters between reversal and nonreversal groups. Conclusions This study identified that the proportion of temporary ostomies was limited to 50%. Complications during the index operation, medical comorbidities, and progression of cancer are the main reasons for nonreversal of temporary stomas. Study findings should be included in the counseling of patients who are likely to get intestinal stomas with temporary intention, and during consideration for later reversal of a stoma.

Health care spending in the months before death varies across geographic areas but is not associated with outcomes. Using data from the prospective multiregional Cancer Care Outcomes Research and Surveillance Consortium (CanCORS) study, we assessed the extent to which such variation is explained by differences in patients’ sociodemographic factors, clinical factors, and beliefs; physicians’ beliefs; and the availability of services. Among 1,132 patients ages sixty-five and older who were diagnosed with lung or colorectal cancer in 2003–05, had advanced-stage cancer, died before 2013, and were enrolled in fee-for-service Medicare, mean expenditures in the last month of life were $13,663. Physicians in higher-spending areas reported less knowledge about and comfort with treating dying patients and less positive attitudes about hospice, compared to those in lower-spending areas. Higher-spending areas also had more physicians and fewer primary care providers and hospices in proportion to their total populatio...

Health information technology is a core infrastructure for the chronic care model, integrated care, and other organized care delivery models. From the provider perspective, health information exchange (HIE) helps aggregate and share information about a patient or population from several sources. HIE technologies include direct messages, transfer of care, and event notification services. From the patient perspective, personal health records, secure messaging, text messages, and other mHealth applications may coordinate patients and providers. Patient-reported outcomes and social media technologies enable patients to share health information with many stakeholders, including providers, caregivers, and other patients. An information architecture that integrates personal health record and mHealth applications, with HIEs that combine the electronic health records of multiple healthcare systems will create a rich, dynamic ecosystem for patient collaboration.

BACKGROUND The population of cancer survivors is rapidly growing in the United States. Long-term and late effects of cancer, combined with the ongoing management of other chronic conditions, make survivors particularly vulnerable to polypharmacy and its adverse effects. In the current study, the authors examined patterns of prescription medication use and polypharmacy in a population-based sample of cancer survivors. METHODS Using data from the Medical Expenditure Panel Survey (MEPS), the authors matched cancer survivors (5216 survivors) with noncancer controls (19,588 controls) by age, sex, and survey year. Polypharmacy was defined as ≥5 unique medications. The authors estimated the percentage of respondents prescribed medications within therapeutic classes and total prescription expenditures. RESULTS A higher percentage of cancer survivors were prescribed ≥5 unique medications (64.0%; 95% confidence interval [95% CI], 62.3%-65.8%) compared with noncancer controls (51.5%; 95% CI, 50.4%-52.6%), including drugs with abuse potential. Across all therapeutic classes, a higher percentage of newly (≤1 year since diagnosis) and previously (>1 years since diagnosis) diagnosed survivors were prescribed medications compared with controls, with large differences observed with regard to central nervous system agents (65.8% [95% CI, 62.3%-69.3%] vs 57.4% [95% CI, 55.3%-59.5%] vs 46.0% [95% CI, 45.0%-46.9%]). Specifically, nearly 10% of survivors were prescribed benzodiazepines and/or opioids compared with approximately 5% of controls. Survivors had more than double the prescription expenditures (median of $1633 vs $784 among controls). Findings persisted across age and comorbidity categories. CONCLUSIONS Cancer survivors were prescribed a higher number of unique medications, including drugs with abuse potential, thereby increasing their risk of adverse drug events, financial toxicity, poor adherence, and drug-drug interactions. Cancer 2018;124:2850-2857. © 2018 American Cancer Society.

According to a landmark study by the Institute of Medicine, patients with cancer often receive poorly coordinated care in multiple settings from many providers. Lack of coordination is associated with poor symptom control, medical errors, and higher costs. The aims of this systematic review and meta-analysis were to (1) synthesize the findings of studies addressing cancer care coordination, (2) describe study outcomes across the cancer continuum, and (3) obtain a quantitative estimate of the effect of interventions in cancer care coordination on service system processes and patient health outcomes. Of 1241 abstracts identified through MEDLINE, EMBASE, CINAHL, and the Cochrane Library, 52 studies met the inclusion criteria. Each study had US or Canadian participants, comparison or control groups, measures, times, samples, and/or interventions. Two researchers independently applied a standardized search strategy, coding scheme, and online coding program to each study. Eleven studies met the additional criteria for the meta-analysis; a random effects estimation model was used for data analysis. Cancer care coordination approaches led to improvements in 81 % of outcomes, including screening, measures of patient experience with care, and quality of end-of-life care. Across the continuum of cancer care, patient navigation was the most frequent care coordination intervention, followed by home telehealth; nurse case management was third in frequency. The meta-analysis of a subset of the reviewed studies showed that the odds of appropriate health care utilization in cancer care coordination interventions were almost twice (OR = 1.9, 95 % CI = 1.5–3.5) that of comparison interventions. This review offers promising findings on the impact of cancer care coordination on increasing value and reducing healthcare costs in the USA.