Search

Background: The most widely accepted end point in randomized cancer screening trials is disease-specific mortality. The validity of this end point, however, rests on the assumption that cause of death can be determined accurately. An alternative end point is all-cause mortality, which depends only on the accurate ascertainment of deaths and when they occur. We compared disease-specific and all-cause mortality in published randomized cancer-screening trials to indirectly assess the validity of the disease-specific mortality end point.Methods: We examined all 12 published randomized trials of cancer screening for which both end points were available (seven of mammography, three of fecal occult blood detection, and two of chest x-ray screening for lung cancer). For each randomized trial, we subtracted disease-specific mortality observed in the screened group from that observed in the control group and all-cause mortality in the screened group from that in the control group. We then compared the differences in these two mortality measures.Results: In five of the 12 trials, differences in the two mortality rates went in opposite directions, suggesting opposite effects of screening. In four of these five trials, disease-specific mortality was lower in the screened group than in the control group, whereas all-cause mortality was the same or higher. In two of the remaining seven trials, the mortality rate differences were in the same direction but their magnitudes were inconsistent; i.e., the difference in all-cause mortality exceeded the disease-specific mortality in the control group. Thus, results of seven of the 12 trials were inconsistent in their direction or magnitude.Conclusion: Major inconsistencies were identified in disease-specific and all-cause mortality end points in randomized cancer screening trials. Because all-cause mortality is not affected by bias in classifying the cause of death, it should be examined when interpreting the results of randomized cancer-screening trials. [ABSTRACT FROM AUTHOR]

Abstract Background Based on barriers to the use of computerized clinical decision support (CDS) learned in an earlier field study, we prototyped design enhancements to the Veterans Health Administration's (VHA's) colorectal cancer (CRC) screening clinical reminder to compare against the VHA's current CRC reminder. Methods In a controlled simulation experiment, 12 primary care providers (PCPs) used prototypes of the current and redesigned CRC screening reminder in a within-subject comparison. Quantitative measurements were based on a usability survey, workload assessment instrument, and workflow integration survey. We also collected qualitative data on both designs. Results Design enhancements to the VHA's existing CRC screening clinical reminder positively impacted aspects of usability and workflow integration but not workload. The qualitative analysis revealed broad support across participants for the design enhancements with specific suggestions for improving the reminder further. Conclusions This study demonstrates the value of a human-computer interaction evaluation in informing the redesign of information tools to foster uptake, integration into workflow, and use in clinical practice.

Abstract Background Practice registry measurement provides a foundation for quality improvement, but experiences in practice are not widely reported. One setting where practice registry measurement has been implemented is the Health Resources and Services Administration's Health Disparities Cancer Collaborative (HDCC). Methods Using practice registry data from 16 community health centers participating in the HDCC, we determined the completeness of data for screening, follow-up, and treatment measures. We determined the size of the change in cancer care processes that an aggregation of practices has adequate power to detect. We modeled different ways of presenting before/after changes in cancer screening, including count and proportion data at both the individual health center and aggregate collaborative level. Results All participating health centers reported data for cancer screening, but less than a third reported data regarding timely follow-up. For individual cancers, the aggregate HDCC had adequate power to detect a 2 to 3% change in cancer screening, but only had the power to detect a change of 40% or more in the initiation of treatment. Almost every health center (98%) improved cancer screening based upon count data, while fewer (77%) improved cancer screening based upon proportion data. The aggregate collaborative appeared to increase breast, cervical, and colorectal cancer screening rates by 12%, 15%, and 4%, respectively (p < 0.001 for all before/after comparisons). In subgroup analyses, significant changes were detectable among individual health centers less than one-half of the time because of small numbers of events. Conclusions The aggregate HDCC registries had both adequate reporting rates and power to detect significant changes in cancer screening, but not follow-up care. Different measures provided different answers about improvements in cancer screening; more definitive evaluation would require validation of the registries. Limits to the implementation and interpretation of practice registry measurement in the HDCC highlight challenges and opportunities for local and aggregate quality improvement activities.

Background: Long-term survival for patients with differentiated (papillary, follicular, and Hürthle cell) thyroid cancer exceeds 95% but self-reported health-related quality of life scores remain low compared with survivors of cancers with worse prognoses. There are reports that thyroid hormone replacement therapy is associated with lower health-related quality of life. This hypothesis was tested in a sample of Medicare Advantage survivors of differentiated thyroid cancer., Methods: Data were obtained from the linked 2007-2017 Surveillance, Epidemiology and End Results-Medicare Health Outcomes Survey for patients with differentiated thyroid cancer to conduct a cross-sectional study. Levothyroxine 6-month defined daily dose was calculated from claims data. Defined daily dose was classified as low, average, or high on the basis of standard deviations around body mass index-specific means. Veterans RAND 12-item Quality of Life Survey measures were categorized by T score as low health-related quality of life (T scores ≤25), moderately low (25< T scores ≤50), and high (T scores >50). The association of defined daily dose and health-related quality of life was tested using multinomial logistic regression., Results: Among patients with differentiated thyroid cancer (n = 782), 67.5% were prescribed levothyroxine for thyroid hormone replacement therapy (mean defined daily dose 123 μg; standard deviation 44.1 μg). Greater defined daily dose was associated with greater relative risk of low (compared with moderately low) health-related quality of life on several measures including Role Limitation (relative risk, 4.9, 95% confidence interval, 2.1-11.6) and Social Functioning (relative risk, 5.6, 95% confidence interval, 2.5-12.5), as well as greater relative risk of multiple low-scoring health-related quality of life measures., Conclusion: Results suggest greater-than-average thyroid hormone replacement therapy dosages may be associated with lower health-related quality of life among survivors of differentiated thyroid cancer. Given the prevalence of thyroid hormone replacement therapy among survivors of differentiated thyroid cancer, thyroid hormone replacement therapy dose adjustment warrants close attention to address the functional and psychosocial well-being of patients., Competing Interests: Conflict of Interest/Disclosure The authors have no relevant financial disclosures. This study used data from the Surveillance, Epidemiology, and End Results (SEER)- Medicare Health Outcomes Survey (MHOS) linked data resource. The interpretation and reporting of these data are the sole responsibility of the authors. The authors acknowledge the efforts of the National Cancer Institute; the Centers for Medicare & Medicaid Services; Information Management Services (IMS), Inc; and the SEER Program tumor registries in the creation of the SEER-MHOS database., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Population health in the United States continues to lag behind other wealthy nations. Primary care has the promise of enhancing population health; however, the implementation of a population health approach within primary care deserves further consideration. Clinicians and staff from a national sample of 10 innovative primary care practices participated in a working conference to reflect upon population health approaches in primary care. A series of small- and large-group discussions were recorded, transcribed, and coded through an immersion/crystallization approach. Two prominent themes emerged: (1) Transitioning to a population health focus generally develops through stages, with early implementation focusing on risk stratification and later, more advanced stages focusing on community health; and (2) Several inherent barriers confront implementation of a population health approach, including tensions with patient-centered care, and limitations of health information technology. A broader conceptualization of population health in terms of community health could more effectively allow partnerships among primary care, large health care systems, public health organizations, patients, and other partners in the community., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Haggstrom, Gabbay, Miller, Howard and Crabtree.)

The purpose of this article is to examine the association of relationship satisfaction concordance between breast cancer survivors (BCSs) and their partners with matched controls on physical and psychosocial outcomes. Dyads of BCSs, age-matched controls, and partners were recruited as part of a larger, cross-sectional QOL survey study. Relationship concordance was measured by the ENRICH marital satisfaction score, with each dyad's score equaling the absolute value of the difference in satisfaction between survivor/control and their partner (lower score = greater concordance). Dependent variables for survivors/controls were social constraint, physical function, depression, fatigue, attention function, and sleep disturbance. Relationship satisfaction and concordance were used as the primary independent variables, while controlling for dyad category, race, education, income, and age within multiple linear regression models. The sample consisted of 387 dyads (220 BCSs, 167 controls). Relationship satisfaction concordance ranged from 0 to 53.4 (mean = 10.2). The BCS dyads had significantly worse concordance (11.1) than the controls (9.1) ( p = 0.050). Within the multiple regression models, lower concordance was significantly associated with increased social constraint ( p = 0.029), increased depression ( p = 0.038), and increased fatigue ( p = 0.006). Poor relationship satisfaction and concordance were significantly associated with poor physical and psychosocial outcomes. The maintenance of relationships should remain a focus through difficulties of cancer and into survivorship for survivors, partners, and providers.

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/territory 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. 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. 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/territory of birth, income, and education but not by rural residence status. Predictors of cancer risk/risk reduction behaviors were identified. The Hispanic population in Indiana is diverse and effective interventions for cancer prevention should be culturally targeted based on country/territory of birth and individually tailored based on cancer-related beliefs., (© 2023. The Author(s).)

Objective: To determine if accurate documentation of bladder cancer risk was associated with a clinician surveillance recommendation that is concordant with AUA guidelines among patients with nonmuscle invasive bladder cancer (NMIBC)., Methods: We prospectively collected data from cystoscopy encounter notes from four Department of Veterans Affairs (VA) sites to ascertain whether they included accurate documentation of bladder cancer risk and a recommendation for a guideline-concordant surveillance interval. Accurate documentation was a clinician-recorded risk classification matching a gold standard assigned by the research team. Clinician recommendations were guideline-concordant if the clinician recorded a surveillance interval that was in line with the AUA guideline., Results: Among 296 encounters, 75 were for low-, 98 for intermediate-, and 123 for high-risk NMIBC. 52% of encounters had accurate documentation of NMIBC risk. Accurate documentation of risk was less common among encounters for low-risk bladder cancer (36% vs 52% for intermediate- and 62% for high-risk, P < .05). Guideline-concordant surveillance recommendations were also less common in patients with low-risk bladder cancer (67% vs 89% for intermediate- and 94% for high-risk, P < .05). Accurate documentation was associated with a 29% and 15% increase in guideline-concordant surveillance recommendations for low- and intermediate-risk disease, respectively (P < .05)., Conclusion: Accurate risk documentation was associated with more guideline-concordant surveillance recommendations among low- and intermediate-risk patients. Implementation strategies facilitating assessment and documentation of risk may be useful to reduce overuse of surveillance in this group and to prevent unnecessary cost, anxiety, and procedural harms., Competing Interests: Declaration of Competing Interest Florian R. Schroeck reports research funding from Pacific Edge, Ltd., (Published by Elsevier Inc.)

The study assessed the association and concordance of the traditional geography-based Rural-Urban Commuting Area (RUCA) codes to individuals' self-reported rural status per a survey scale. The study included residents from rural and urban Indiana, seen at least once in a statewide health system in the past 12 months. Surveyed self-reported rural status of individuals obtained was measured using 6 items with a 7-point Likert scale. Cronbach's alpha was used to measure the internal consistency between the 6 survey response items, along with exploratory factor analysis to evaluate their construct validity. Perceived rurality was compared with RUCA categorization, which was mapped to residential zip codes. Association and concordance between the 2 measures were calculated using Spearman's rank correlation coefficient and Gwet's Agreement Coefficient (Gwet's AC), respectively. Primary self-reported data were obtained through a cross-sectional, statewide, mail-based survey, administered from January 2018 through February 2018, among a random sample of 7979 individuals aged 18 to 75, stratified by rural status and race. All 970 patients who completed the survey answered questions regarding their perceived rurality. Cronbach's alpha value of 0.907 was obtained indicating high internal consistency among the 6 self-perceived rurality items. Association of RUCA categorization and self-reported geographic status was moderate, ranging from 0.28 to 0.41. Gwet's AC ranged from -0.11 to 0.26, indicating poor to fair agreement between the 2 measures based on the benchmark scale of reliability. Geography-based and self-report methods are complementary in assessing rurality. Individuals living in areas of relatively high population density may still self-identify as rural, or individuals with long commutes may self-identify as urban., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2023 the Author(s). Published by Wolters Kluwer Health, Inc.)

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 and 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 concordance between the two measures., Results: Gwet's AC for HIE and self-report of screening receipt ranged from 0.24-0.73, indicating a fair to substantial concordance. For the time since receipt of last screening test, the Gwet's AC ranged from 0.21-0.90, indicating fair to almost perfect concordance. In comparison with SR data, HIE data provided relatively more additional information about laboratory-based tests: FIT (19% HIE alone vs. 4% SR alone) and HPV tests (27% HIE alone vs. 12% SR alone) and less additional information about procedures: colonoscopy (8% HIE alone vs. 23% SR alone), Pap test (13% HIE alone vs. 19% SR alone), or mammography (9% HIE alone vs. 10% 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., (© 2023. This is a U.S. Government work and not under copyright protection in the US; foreign copyright protection may apply.)

Background: Measures taken to address the COVID-19 pandemic interrupted routine diagnosis and care for breast cancer. The aim of this study was to characterize the effects of the pandemic on breast cancer care in a statewide cohort., Patients and Methods: Using data from a large health information exchange, we retrospectively analyzed the timing of breast cancer screening, and identified a cohort of newly diagnosed patients with any stage of breast cancer to further access the information available about their surgical treatments. We compared data for four subgroups: pre-lockdown (preLD) 25 March to 16 June 2019; lockdown (LD) 23 March to 3 May 2020; reopening (RO) 4 May to 14 June 2020; and post-lockdown (postLD) 22 March to 13 June 2021., Results: During LD and RO, screening mammograms in the cohort decreased by 96.3% and 36.2%, respectively. The overall breast cancer diagnosis and surgery volumes decreased up to 38.7%, and the median time to surgery was prolonged from 1.5 months to 2.4 for LD and 1.8 months for RO. Interestingly, higher mean DCIS diagnosis (5.0 per week vs. 3.1 per week, p < 0.05) and surgery volume (14.8 vs. 10.5, p < 0.05) were found for postLD compared with preLD, while median time to surgery was shorter (1.2 months vs. 1.5 months, p < 0.0001). However, the postLD average weekly screening and diagnostic mammogram did not fully recover to preLD levels (2055.3 vs. 2326.2, p < 0.05; 574.2 vs. 624.1, p < 0.05)., Conclusions: Breast cancer diagnosis and treatment patterns were interrupted during the lockdown and still altered 1 year after. Screening in primary care should be expanded to mitigate possible longer-term effects of these interruptions., (© 2023. Society of Surgical Oncology.)

Background: Opioid use disorder (OUD) contributes to rising morbidity and mortality. Life-saving OUD treatments can be provided in primary care but most patients with OUD don't receive treatment. Comorbid depression and other conditions complicate OUD management, especially in primary care. The MI-CARE trial is a pragmatic randomized encouragement (Zelen) trial testing whether offering collaborative care (CC) to patients with OUD and clinically-significant depressive symptoms increases OUD medication treatment with buprenorphine and improves depression outcomes compared to usual care., Methods: Adult primary care patients with OUD and depressive symptoms (n ≥ 800) from two statewide health systems: Kaiser Permanente Washington and Indiana University Health are identified with computer algorithms from electronic Health record (EHR) data and automatically enrolled. A random sub-sample (50%) of eligible patients is offered the MI-CARE intervention: a 12-month nurse-driven CC intervention that includes motivational interviewing and behavioral activation. The remaining 50% of the study cohort comprise the usual care comparison group and is never contacted. The primary outcome is days of buprenorphine treatment provided during the intervention period. The powered secondary outcome is change in Patient Health Questionnaire (PHQ)-9 depression scores. Both outcomes are obtained from secondary electronic healthcare sources and compared in "intent-to-treat" analyses., Conclusion: MI-CARE addresses the need for rigorous encouragement trials to evaluate benefits of offering CC to generalizable samples of patients with OUD and mental health conditions identified from EHRs, as they would be in practice, and comparing outcomes to usual primary care. We describe the design and implementation of the trial, currently underway., Trial Registration: ClinicalTrials.gov Identifier: NCT05122676. Clinical trial registration date: November 17, 2021., (Copyright © 2023 Elsevier Inc. All rights reserved.)

Background: Cancer is the leading cause of death for Hispanics in the USA. Screening and prevention reduce cancer morbidity and mortality., Methods: This study administered a cross-sectional web-based survey to self-identified Hispanic residents in the state of Indiana to assess their cancer-related knowledge, beliefs, and behaviors, as well as to identify what factors might be associated with cancer screening and prevention. Chi-square and Fisher's exact test were used to compare associations and logistic regression used to develop both univariate and multivariate regression models., Results: A total of 1520 surveys were completed, median age of respondents was 53, 52% identified as men, 50.9% completed the survey in Spanish, and 60.4% identified the USA as their country of birth. Most were not able to accurately identify ages to begin screening for breast, colorectal, or lung cancer, and there were significant differences in cancer knowledge by education level. US-born individuals with higher income and education more often believed they were likely to develop cancer and worry about getting cancer. Sixty eight percent of respondents were up-to-date with colorectal, 44% with breast, and 61% with cervical cancer screening. Multivariate models showed that higher education, lack of fatalism, older age, lower household income, and unmarried status were associated with cervical cancer screening adherence., Conclusions: Among a Hispanic population in the state of Indiana, factors associated with cervical cancer screening adherence were similar to the general population, with the exceptions of income and marital status. Younger Hispanic individuals were more likely to be adherent with breast and colorectal cancer screening, and given the higher incidence of cancer among older individuals, these results should guide future research and targeted outreach., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

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., (©Nimish Valvi, Hetvee Patel, Giorgos Bakoyannis, David A Haggstrom, Sanjay Mohanty, Brian E Dixon. Originally published in JMIR Cancer (https://cancer.jmir.org), 06.10.2022.)

Background: Implementation Mapping is an organized method to select implementation strategies. However, there are 73 Expert Recommendations for Implementing Change (ERIC) strategies. Thus, it is difficult for implementation scientists to map all potential strategies to the determinants of their chosen implementation science framework. Prior work using Implementation Mapping employed advisory panels to select implementation strategies. This article presents a data-driven approach to implementation mapping, in which we systematically evaluated all 73 ERIC strategies using the Tailored Implementation for Chronic Diseases (TICD) framework. We illustrate our approach using implementation of risk-aligned bladder cancer surveillance as a case example., Methods: We developed objectives based on previously collected qualitative data organized by TICD determinants, i.e., what needs to be changed to achieve more risk-aligned surveillance. Next, we evaluated all 73 ERIC strategies, excluding those that were not applicable to our clinical setting. The remaining strategies were mapped to the objectives using data visualization techniques to make sense of the large matrices. Finally, we selected strategies with high impact, based on (1) broad scope, defined as a strategy addressing more than the median number of objectives, (2) requiring low or moderate time commitment from clinical teams, and (3) evidence of effectiveness from the literature., Results: We identified 63 unique objectives. Of the 73 ERIC strategies, 45 were excluded because they were not applicable to our clinical setting (e.g., not feasible within the confines of the setting, not appropriate for the context). Thus, 28 ERIC strategies were mapped to the 63 objectives. Strategies addressed 0 to 26 objectives (median 10.5). Of the 28 ERIC strategies, 10 required low and 8 moderate time commitments from clinical teams. We selected 9 strategies based on high impact, each with a clearly documented rationale for selection., Conclusions: We enhanced Implementation Mapping via a data-driven approach to the selection of implementation strategies. Our approach provides a practical method for other implementation scientists to use when selecting implementation strategies and has the advantage of favoring data-driven strategy selection over expert opinion., (© 2022. The Author(s).)

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., (©Eric Vachon, Bruce W Robb, David A Haggstrom. Originally published in JMIR Cancer (https://cancer.jmir.org), 11.08.2022.)

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., (©2022 American Association for Cancer Research.)

Background: Personal health records (PHRs) may be useful for patient self-management and participation in communication with their caregivers and health care providers. As each potential participant's role is different, their perception of the best uses of a PHR may vary., Objective: The perspectives of patients, caregivers, and providers were all evaluated concurrently in relation to a PHR developed for colorectal cancer (CRC) survivors., Methods: We explored group perceptions of a CRC PHR prototype. Scenario-based testing across eight use cases, with semistructured follow-up interviews, was videotaped in a human-computer interaction laboratory with patients, caregivers, and health care providers. Providers included oncologists, gastroenterologists, and primary care physicians. Discrete observations underwent grounded theory visual affinity analysis to identify emergent themes., Results: Observations fell into three major themes: the network (who should be granted access to the PHR by the patient), functions (helpful activities the PHR enabled), and implementation (how to adopt the PHR into workflow). Patients wanted physician access to their PHR, as well as family member access, especially when they lived at a distance. All groups noted the added value of linking the PHR to an electronic health record, self-tracking, self-management, and secure messaging. Patients and caregivers also saw information in the PHR as a useful memory tool given their visits to multiple doctors. Providers had reservations about patients viewing raw data, which they were not prepared to interpret or might be inaccurate; patients and caregivers did not express any reservations about having access to more information. Patients saw PHR communication functions as a potential tool for relationship building. Patients and caregivers valued the journal as a tool for reflection and delivery of emotional support. Providers felt the PHR would facilitate patient-physician communication but worried that sharing journal access would make the doctor-patient relationship less professional and had reservations about the time burden of reviewing. Strategies suggested for efficient adoption into workflow included team delegation. Establishment of parameters for patient uses and provider responses was perceived as good standard practice., Conclusions: PHR perceptions differed by role, with providers seeing the PHR as informational, while patients and caregivers viewed the tool as more relational. Personal health records should be linked to electronic health records for ease of use. Tailoring access, content, and implementation of the PHR is essential. Technology changes have the potential to change the nature of the patient-physician relationship. Patients and providers should establish shared expectations about the optimal use of the PHR and explore how emerging patient-centered technologies can be successfully implemented in modern medical practice to improve the relational quality of care., (©David A Haggstrom, Thomas Carr. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 25.01.2022.)

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., Competing Interests: Florian R. SchroeckOther Relationship: Sesen BioNo other potential conflicts of interest were reported.

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., (©Suranga N Kasturi, Jeremy Park, David Wild, Babar Khan, David A Haggstrom, Shaun Grannis. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 15.11.2021.)

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: A total of 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., (© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.)

Objectives: 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., Methods: 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., Results: 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)., Conclusion: 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 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., (© 2021 American Cancer Society.)

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., (© 2020 John Wiley & Sons Ltd.)

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., (©Brian E Dixon, Cherie Luckhurst, David A Haggstrom. Originally published in JMIR Medical Informatics (http://medinform.jmir.org), 22.02.2021.)

Purpose: 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., Methods: 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)., Results: 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 < 0.001). Information about the psychological effects of cancer (41% vs. 29%; p < 0.001) and healthy behaviors (67% vs. 41%; p < 0.001) were considered more useful to patients than to PCPs. From 3 to 20% of oncologists believed that any given component of the SCP was not useful to either PCPs or patients. Oncologists who perceived SCPs to be more useful tended to be female or to practice in settings with a fully implemented electronic health record., Conclusions: Oncologists do not perceive all components of SCPs to be equally useful to both patients and PCPs. To be successfully implemented, the SCP should be efficiently tailored to the unique needs and knowledge of patients and their PCPs. A minority of oncologists appear to be late adopters, suggesting that some resistance to the adoption of SCPs remains.

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.

Objective: 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., Methods: 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., Results: Cancer stage increased with rurality (p < 0.0001). Residency in a large metropolitan area was associated with increased breast reconstruction rates (odds ratio [OR] 1.25, 95% confidence interval [CI] 1.19-1.30) and reduced overall mortality (hazard ratio 0.92, 95% CI 0.89-0.95) compared with rural areas. There was no difference in mastectomy use among small metropolitan (OR 1.03, 95% CI 1.01-1.04), urban (OR 0.99, 95% CI 0.98-1), and rural areas (OR 1.05, 95% CI 1.01-1.07) compared with large metropolitan areas., Conclusions: Across the rural-urban continuum in the NCDB, stage of cancer presentation increased with rurality. Conversely, residency in a large metropolitan area was associated with higher reconstruction rates and a reduction in overall mortality. Future studies should evaluate factors contributing to advanced disease presentation and lower reconstruction rates among rural breast cancer patients.

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., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Background: A pharmacogenomic clinical decision support tool (PGx-CDS) for thiopurine medications can help physicians incorporate pharmacogenomic results into prescribing decisions by providing up-to-date, real-time decision support. However, the PGx-CDS user interface may introduce errors and promote alert fatigue. The objective of this study was to develop and evaluate a prototype of a PGx-CDS user interface for thiopurine medications with user-centered design methods., Methods: This study had two phases: In phase I, we conducted qualitative interviews to assess providers' information needs. Interview transcripts were analyzed through a combination of inductive and deductive qualitative analysis to develop design requirements for a PGx-CDS user interface. Using these requirements, we developed a user interface prototype and evaluated its usability (phase II)., Results: In total, 14 providers participated: 10 were interviewed in phase I, and seven providers completed usability testing in phase II (3 providers participated in both phases). Most (90%) participants were interested in PGx-CDS systems to help improve medication efficacy and patient safety. Interviews yielded 11 themes sorted into two main categories: 1) health care providers' views on PGx-CDS and 2) important design features for PGx-CDS. We organized these findings into guidance for PGx-CDS content and display. Usability testing of the PGx-CDS prototype showed high provider satisfaction., Conclusion: This is one of the first studies to utilize a user-centered design approach to develop and assess a PGx-CDS interface prototype for Thiopurine Methyltransferase (TPMT). This study provides guidance for the development of a PGx-CDS, and particularly for biomarkers such as TPMT.

Background: As a result of improvements in cancer screening, treatment, and supportive care, nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) live for 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans provide a means of supporting the long-term care of cancer survivors., Objective: The purpose of this study is to characterize the usefulness of a CRC PHR and survivorship care plan and to describe the usability of these technologies in a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and survivorship care plan specifically targeting CRC survivors., Methods: Twenty-two patients with CRC were recruited from surgery clinics of an academic medical center and Veterans Affairs hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor's Personal Health Record (CRCS-PHR). Survey data were collected to characterize the usefulness of the CRCS-PHR and describe its usability in a population of CRC survivors. CRC survivors were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method., Results: CRC survivors perceived features related to their health care (ie, summary of cancer treatment history, follow-up care schedule, description of side effects, and list of community resources) to be more useful than communication features (ie, creating online relationships with family members or caregivers, communicating with doctor, and secure messages). CRC survivors typically described utilizing traditional channels (eg, via telephone or in person) to communicate with their health care provider. Participants had overall positive perceptions with respect to ease of use and overall satisfaction. Major challenges experienced by participants included barriers to system log-in, lack of computer literacy or experience, and difficulty entering their patient information., Conclusions: For CRC, survivors may find the greater value in a PHR's medical content than the communication functions, which they have available elsewhere. These findings regarding the usefulness and usability of a PHR for the management of CRC survivorship provide valuable insights into how best to tailor these technologies to patients' needs. These findings can inform future design and development of PHRs for purposes of both cancer and chronic disease management., (©Will L Tarver, Bruce W Robb, David A Haggstrom. Originally published in JMIR Cancer (http://cancer.jmir.org), 20.08.2019.)

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., (Copyright © 2019 Elsevier Inc. All rights reserved.)

This perspective paper seeks to lay out an efficient approach for health care providers, researchers, and other stakeholders involved in interventions aimed at improving care coordination to partner in locating and using applicable care coordination theory. The objective is to learn from relevant theory-based literature about fit between intervention options and coordination needs, thereby bringing insights from theory to enhance intervention design, implementation, and troubleshooting. To take this idea from an abstract notion to tangible application, our workgroup on models and measures from the Veterans Health Administration (VA) State of the Art (SOTA) conference on care coordination first summarizes our distillation of care coordination theoretical frameworks (models) into three common conceptual domains-context of an intervention, locus in which an intervention is applied, and specific design features of the intervention. Then we apply these three conceptual domains to four cases of care coordination interventions ("use cases") chosen to represent various scopes and stages of interventions to improve care coordination for veterans. Taken together, these examples make theory more accessible and practical by demonstrating how it can be applied to specific cases. Drawing from theory offers one method to anticipate which intervention options match a particular coordination situation.

Background: In the United States, more than 1.6 million new cases of cancer are estimated to be diagnosed each year. However, the burden of cancer among the US population is not shared equally, with racial and ethnic minorities and lower-income populations having a higher cancer burden compared with their counterparts. For example, African Americans have the highest mortality rates and shortest survival rates for most cancers compared with other racial or ethnic groups in the United States. A wide range of technologies (eg, internet-based [electronic health, eHealth] technologies, mobile [mobile health, mHealth] apps, and telemedicine) available to patients are designed to improve their access to care and empower them to participate actively in their care, providing a means to reduce health care disparities; however, little is known of their use among underserved populations., Objective: The aim of this study was to systematically review the current evidence on the use of cancer-specific patient-centered technologies among various underserved populations., Methods: Computer-based search was conducted in the following academic databases: (1) PubMed (cancer subset), (2) MEDLINE, (3) PsycINFO, and (4) CINAHL. We included studies that were peer-reviewed, published in the English language, and conducted in the United States. Each study was individually assessed for relevance, with any disagreements being reconciled by consensus. We used a 3-step inclusion process in which we examined study titles, abstracts, and full-text papers for assessment of inclusion criteria. We systematically extracted information from each paper meeting our inclusion criteria., Results: This review includes 71 papers that use patient-centered technologies that primarily targeted African Americans (n=31), rural populations (n=14), and Hispanics (n=12). A majority of studies used eHealth technologies (n=41) finding them to be leading sources of cancer-related health information and significantly improving outcomes such as screening among nonadherent individuals and increasing knowledge about cancer and cancer screening. Studies on mHealth found that participants reported overall favorable responses to receiving health information via short message service (SMS) text message; however, challenges were experienced with respect to lack of knowledge of how to text among some participants. More complex mobile technologies (eg, a tablet-based risk assessment tool) were also found favorable to use and acceptable among underserved populations; however, they also resulted in more significant barriers, for example, participants expressed concerns regarding security and unfamiliarity with the technology and preferred further instruction and assistance in its use., Conclusions: There is a growing body of literature exploring patient-centered technology and its influence on care of underserved populations. In this review, we find that these technologies seem to be effective, especially when tailored, in improving patient and care-related outcomes. Despite the potential of patient-centered technologies and the receptivity of underserved populations, challenges still exist with respect to their effective use and usability., (©Will L Tarver, David A Haggstrom. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 23.04.2019.)

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., (©2018 American Association for Cancer Research.)

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., (© 2019 National Rural Health Association.)

Background: The National Breast and Cervical Cancer Early Detection Program seeks to reduce health care disparities by providing uninsured and underinsured women access to screening mammograms. The objective of this study is to identify the differences in presentation, surgical management, and mortality among nonmetastatic uninsured patients diagnosed through Indiana's Breast and Cervical Cancer Program compared with patients with private and government (Medicare or Medicaid) insurance., Methods: Study data were obtained using the Indiana state cancer registry and Indiana's Breast and Cervical Cancer Program. Women aged 50 to 64 with an index diagnosis of stage 0 to III breast cancer from January 1, 2006 to December 31, 2013, were included in the study. Bivariate intergroup analysis was conducted. Kaplan-Meier estimates between insurance types were compared using the log rank test. All-cause mortality was evaluated using a mixed effects model., Results: The groups differed significantly for sociodemographic and clinical variables. Uninsured Indiana Breast and Cervical Cancer Program patients presented with later disease stage (P < .001) and had the highest overall mortality (hazard ratio 2.2, P = .003). Surgical management only differed among stage III patients (P = .012)., Conclusion: To improve insurance-based disparities in Indiana, implementation of the Breast and Cervical Cancer Program in conjunction with expansion of insurance coverage to vulnerable low-income populations need to be optimized., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Purpose: Sleep, pain, anxiety, depression, and low energy/fatigue (SPADE pentad) symptoms are common, but often unrecognized and undertreated in primary care. In an effort to improve symptom outcomes, primary care clinics are integrating patient-reported outcome measures (PROs), such as the Patient-Reported Outcome Measurement Information System (PROMIS), into practice. Whether patients with SPADE symptoms perceive these measures as useful is unknown. The purpose of this qualitative study was to explore patients' perceptions of the utility of symptom-based PROs in primary care., Methods: As part of a mixed-methods study, 23 patients (age 24-77 years) with one or more SPADE symptoms participated in one-on-one interviews about the use, implementation and visual display of PROMIS. All interviews were audio-recorded, transcribed, and analyzed using thematic analysis., Results: Five themes emerged: (1) PROs may foster communication about symptoms; (2) data from PROs may prompt clinical actions; (3) the visual display of symptom scores could be useful for patients and providers, though modifications may enhance interpretation; (4) implementation may vary according to patients' perception of PRO features (e.g., length); and (5) PROs may be useful, but only to the extent that they are valued, prioritized, and used., Conclusions: According to patients, the use of PROs to measure symptoms in primary care clinics has the potential to be useful. However, patients are reluctant to complete PROs if they perceive that clinicians do not use the measures to improve care. Barriers to implementation in primary care (e.g., duration of visit) should be addressed to enhance the utility of PROs. Clinical trial registration ClinicalTrials.gov ID: NCT02383862.

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.

Background: Symptoms account for more than 400 million clinic visits annually in the USA. The SPADE symptoms (sleep, pain, anxiety, depression, and low energy/fatigue) are particularly prevalent and undertreated., Objective: To assess the effectiveness of providing PROMIS (Patient-Reported Outcome Measure Information System) symptom scores to clinicians on symptom outcomes., Design: Randomized clinical trial conducted from March 2015 through May 2016 in general internal medicine and family practice clinics in an academic healthcare system., Participants: Primary care patients who screened positive for at least one SPADE symptom., Interventions: After completing the PROMIS symptom measures electronically immediately prior to their visit, the 300 study participants were randomized to a feedback group in which their clinician received a visual display of symptom scores or a control group in which scores were not provided to clinicians., Main Measures: The primary outcome was the 3-month change in composite SPADE score. Secondary outcomes were individual symptom scores, symptom documentation in the clinic note, symptom-specific clinician actions, and patient satisfaction., Key Results: Most patients (84%) had multiple clinically significant (T-score ≥ 55) SPADE symptoms. Both groups demonstrated moderate symptom improvement with a non-significant trend favoring the feedback compared to control group (between-group difference in composite T-score improvement, 1.1; P = 0.17). Symptoms present at baseline resolved at 3-month follow-up only one third of the time, and patients frequently still desired treatment. Except for pain, clinically significant symptoms were documented less than half the time. Neither symptom documentation, symptom-specific clinician actions, nor patient satisfaction differed between treatment arms. Predictors of greater symptom improvement included female sex, black race, fewer medical conditions, and receiving care in a family medicine clinic., Conclusions: Simple feedback of symptom scores to primary care clinicians in the absence of additional systems support or incentives is not superior to usual care in improving symptom outcomes., Trial Registration: clinicaltrials.gov identifier: NCT02383862.

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., (© 2018 American Cancer Society.)

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 population than lower-spending areas did. Availability of services and physicians' beliefs, but not patients' beliefs, were important in explaining geographic variations in end-of-life spending. Enhanced training to better equip physicians to care for patients at the end of life and strategic resource allocation may have potential for decreasing unwarranted variation in care.

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: Cancer registries systematically collect cancer-related data to support cancer surveillance activities. However, cancer data are often unavailable for months to years after diagnosis, limiting its utility., Objective: The objective of this study was to identify the barriers to rapid cancer reporting and identify ways to shorten the turnaround time., Methods: Certified cancer registrars reporting to the Indiana State Department of Health cancer registry participated in a semistructured interview. Registrars were asked to describe the reporting process, estimate the duration of each step, and identify any barriers that may impact the reporting speed. Qualitative data analysis was performed with the intent of generating recommendations for workflow redesign. The existing and redesigned workflows were simulated for comparison., Results: Barriers to rapid reporting included access to medical records from multiple facilities and the waiting period from diagnosis to treatment. The redesigned workflow focused on facilitating data sharing between registrars and applying a more efficient queuing technique while registrars await the delivery of treatment. The simulation results demonstrated that our recommendations to reduce the waiting period and share information could potentially improve the average reporting speed by 87 days., Conclusions: Knowing the time elapsing at each step within the reporting process helps in prioritizing the needs and estimating the impact of future interventions. Where some previous studies focused on automating some of the cancer reporting activities, we anticipate much shorter reporting by leveraging health information technologies to target this waiting period., (©Abdulrahman M Jabour, Brian E Dixon, Josette F Jones, David A Haggstrom. Originally published in JMIR Cancer (http://cancer.jmir.org), 01.03.2018.)

As the third most common cause of cancer death among United States men, colorectal cancer (CRC) represents a significant threat to men's health. Although adherence to CRC screening has the potential to reduce CRC mortality by approximately half, men's current rates of adherence fall below national screening objectives. In qualitative studies, men have reported forgoing screenings involving the rectum (e.g., colonoscopy) due to concern about breaching masculinity norms. However, the extent to which masculinity beliefs predict men's CRC screening adherence has yet to be examined. The current study tested the hypothesis that greater endorsement of masculinity beliefs (i.e., self-reliance, risk-taking, heterosexual self-presentation, and primacy of work) would be associated with a lower likelihood of adherence to CRC screening with any test and with colonoscopy specifically. Participants were 327 men aged 51-75 at average risk for CRC who were accessing primary care services at a Midwestern Veterans Affairs Medical Center. Contrary to hypotheses, masculinity beliefs did not predict CRC screening outcomes in hierarchical regression analyses that controlled for demographic predictors of screening. Although results are largely inconsistent with masculinity theory and prior qualitative findings, further research is needed to determine the degree to which findings generalize to other populations and settings., Competing Interests: Conflict of interest statement The authors declare that they have no conflict of interest.

Background: Patient, physician, and environmental factors were identified, and the authors examined the contribution of these factors to demographic and health variation in colonoscopy follow-up after a positive fecal occult blood test/fecal immunochemical test (FOBT/FIT) screening., Methods: In total, 76,243 FOBT/FIT-positive patients were identified from 120 Veterans Health Administration (VHA) facilities between August 16, 2009 and March 20, 2011 and were followed for 6 months. Patient demographic (race/ethnicity, sex, age, marital status) and health characteristics (comorbidities), physician characteristics (training level, whether primary care provider) and behaviors (inappropriate FOBT/FIT screening), and environmental factors (geographic access, facility type) were identified from VHA administrative records. Patient behaviors (refusal, private sector colonoscopy use) were estimated with statistical text mining conducted on clinic notes, and follow-up predictors and adjusted rates were estimated using hierarchical logistic regression., Results: Roughly 50% of individuals completed a colonoscopy at a VHA facility within 6 months. Age and comorbidity score were negatively associated with follow-up. Blacks were more likely to receive follow-up than whites. Environmental factors attenuated but did not fully account for these differences. Patient behaviors (refusal, private sector colonoscopy use) and physician behaviors (inappropriate screening) fully accounted for the small reverse race disparity and attenuated variation by age and comorbidity score. Patient behaviors (refusal and private sector colonoscopy use) contributed more to variation in follow-up rates than physician behaviors (inappropriate screening)., Conclusions: In the VHA, blacks are more likely to receive colonoscopy follow-up for positive FOBT/FIT results than whites, and follow-up rates markedly decline with advancing age and comorbidity burden. Patient and physician behaviors explain race variation in follow-up rates and contribute to variation by age and comorbidity burden. Cancer 2017;123:3502-12. Published 2017. This article is a US Government work and is in the public domain in the USA., (© 2017 American Cancer Society.)

Background: Annual computed tomography (CT) scans are a component of the current standard of care for the posttreatment surveillance of survivors of colorectal cancer (CRC) after curative-intent resection. The authors conducted a retrospective study with the primary aim of assessing patient, physician, and organizational characteristics associated with the receipt of CT surveillance among veterans., Methods: The Department of Veterans Affairs Central Cancer Registry was used to identify patients diagnosed with AJCC collaborative stage I to III CRC between 2001 and 2009. Patient sociodemographic and clinical (ie, CRC stage and comorbidity) characteristics, provider specialty, and organizational characteristics were measured. Hierarchical multivariable logistic regression models were used to assess the association between patient, provider, and organizational characteristics on receipt of 1) consistently guideline-concordant care (at least 1 CT every 12 months for both of the first 2 years of CRC surveillance) versus no CT receipt and 2) potential overuse (>1 CT every 12 months during the first 2 years of CRC surveillance) of CRC surveillance using CT. The authors also analyzed the impact of the 2005 American Society of Clinical Oncology update in CRC surveillance guidelines on care received over time., Results: For 2263 survivors of stage II/III CRC who were diagnosed after 2005, 19.4% of patients received no surveillance CT, whereas potential overuse occurred in both surveillance years for 14.9% of patients. Guideline-concordant care was associated with younger age, higher stage of disease (stage III vs stage II), and geographic region. In adjusted analyses, younger age and higher stage of disease (stage III vs stage II) were found to be associated with overuse. There was no significant difference in the annual rate of CT scanning noted across time periods (year ≤ 2005 vs year > 2005)., Conclusions: Among a minority of veteran survivors of CRC, both underuse and potential overuse of CT surveillance were present. Patient factors, but no provider or organizational characteristics, were found to be significantly associated with patterns of care. The 2005 change in American Society of Clinical Oncology guidelines did not appear to have an impact on rates of surveillance CT. Cancer 2017;123:2338-2351. © 2017 American Cancer Society., (© 2017 American Cancer Society.)