Accuracy of patient race and ethnicity data in a central cancer registry.

PURPOSE: Race and Hispanic ethnicity data can be challenging for central cancer registries to collect. We evaluated the accuracy of the race and Hispanic ethnicity variables collected by the Utah Cancer Registry compared to self-report. METHODS: Participants were 3,162 cancer survivors who completed questionnaires administered in 2015-2022 by the Utah Cancer Registry. Each survey included separate questions collecting race and Hispanic ethnicity, respectively. Registry-collected race and Hispanic ethnicity were compared to self-reported values for the same individuals. We calculated sensitivity and specificity for each race category and Hispanic ethnicity separately. RESULTS: Survey participants included 323 (10.2%) survivors identifying as Hispanic, a lower proportion Hispanic than the 12.1% in the registry Hispanic variable (sensitivity 88.2%, specificity 96.5%). For race, 43 participants (1.4%) self-identified as American Indian or Alaska Native (AIAN), 32 (1.0%) as Asian, 23 (0.7%) as Black or African American, 16 (0.5%) Pacific Islander (PI), and 2994 (94.7%) as White. The registry race variable classified a smaller proportion of survivors as members of each of these race groups except White. Sensitivity for classification of race as AIAN was 9.3%, Asian 40.6%, Black 60.9%, PI 25.0%, and specificity for each of these groups was > 99%. Sensitivity and specificity for White were 98.8% and 47.4%. CONCLUSION: Cancer registry race and Hispanic ethnicity data often did not match the individual's self-identification. Of particular concern is the high proportion of AIAN individuals whose race is misclassified. Continued attention should be directed to the accurate capture of race and ethnicity data by hospitals.

Cancer survivorship experiences in Utah: an evaluation assessing indicators of survivors' quality of life, health behaviors, and access to health services.

PURPOSE: The 2016-2020 Utah Comprehensive Cancer Prevention and Control Plan prioritized strategies to address cancer survivorship experiences. In this paper we present estimates for nine indicators evaluating these priorities, trends over time, and assess disparities in survivorship experiences across demographic subgroups. METHODS: We surveyed a representative sample of Utah cancer survivors diagnosed between 2012 and 2019 with any reportable cancer diagnosis. We calculated weighted percentages and 95% confidence intervals (CI) for each indicator. We assessed change over time using a test for trend across survey years in a logistic regression model and used Rao-Scott F-adjusted chi-square tests to test the association between demographic characteristics and each survivorship indicator. RESULTS: Most of the 1,793 respondents (93.5%) reported their pain was under control, 85.7% rated their overall health as good, very good, or excellent, but 46.5% experienced physical, mental, or emotional limitations. Only 1.7% of survivors aged 75 or older were current smokers, compared to 5.8% of 65-74-year-olds and 7.9% of survivors aged 55-74 (p < 0.006). No regular physical activity was reported by 20.6% and varied by survivor age and education level. The proportion who received a survivorship care plan increased from 34.6% in 2018 to 43.0% in 2021 (p = 0.025). However, survivors under age 55 were significantly less likely to receive a care plan than older survivors. CONCLUSION: This representative survey of cancer survivors fills a gap in understanding of the cancer survivorship experience in Utah. Results can be used to evaluate and plan additional interventions to improve survivorship quality of life.

Predictors of Response Outcomes for Research Recruitment Through a Central Cancer Registry: Evidence From 17 Recruitment Efforts for Population-Based Studies.

When recruiting research participants through central cancer registries, high response fractions help ensure population-based representation. We conducted multivariable mixed-effects logistic regression to identify case and study characteristics associated with making contact with and obtaining cooperation of Utah cancer cases using data from 17 unique recruitment efforts undertaken by the Utah Cancer Registry (2007-2016) on behalf of the following studies: A Population-Based Childhood Cancer Survivors Cohort Study in Utah, Comparative Effectiveness Analysis of Surgery and Radiation for Prostate Cancer (CEASAR Study), Costs and Benefits of Follow-up Care for Adolescent and Young Adult Cancers, Study of Exome Sequencing for Head and Neck Cancer Susceptibility Genes, Genetic Epidemiology of Chronic Lymphocytic Leukemia, Impact of Remote Familial Colorectal Cancer Risk Assessment and Counseling (Family CARE Project), Massively Parallel Sequencing for Familial Colon Cancer Genes, Medullary Thyroid Carcinoma (MTC) Surveillance Study, Osteosarcoma Surveillance Study, Prostate Cancer Outcomes Study, Risk Education and Assessment for Cancer Heredity Project (REACH Project), Study of Shared Genomic Segment Analysis and Tumor Subtyping in High-Risk Breast-Cancer Gene Pedigrees, Study of Shared Genomic Segment Analysis for Localizing Multiple Myeloma Genes. Characteristics associated with lower odds of contact included Hispanic ethnicity (odds ratio (OR) = 0.34, 95% confidence interval (CI): 0.27, 0.41), nonwhite race (OR = 0.46, 95% CI: 0.35, 0.60), and younger age at contact. Years since diagnosis was inversely associated with making contact. Nonwhite race and age ≥60 years had lower odds of cooperation. Study features with lower odds of cooperation included longitudinal design (OR = 0.50, 95% CI: 0.41, 0.61) and study brochures (OR = 0.70, 95% CI: 0.54, 0.90). Increased odds of cooperation were associated with including a questionnaire (OR = 3.19, 95% CI: 1.54, 6.59), postage stamps (OR = 1.60, 95% CI: 1.21, 2.12), and incentives (OR = 1.62, 95% CI: 1.02, 2.57). Among cases not responding after the first contact, odds of eventual response were lower when >10 days elapsed before subsequent contact (OR = 0.71, 95% CI: 0.59, 0.85). Obtaining high response is challenging, but study features identified in this analysis support better results when recruiting through central cancer registries.

Combining Natural Language Processing of Electronic Medical Notes With Administrative Data to Determine Racial/Ethnic Differences in the Disclosure and Documentation of Military Sexual Trauma in Veterans.

BACKGROUND: Despite national screening efforts, military sexual trauma (MST) is underreported. Little is known of racial/ethnic differences in MST reporting in the Veterans Health Administration (VHA). OBJECTIVE: This study aimed to compare patterns of MST disclosure in VHA by race/ethnicity. RESEARCH DESIGN: Retrospective cohort study of MST disclosures in a national, random sample of Veterans who served in Afghanistan and Iraq and completed MST screens from October 2009 to 2014. We used natural language processing (NLP) to extract MST concepts from electronic medical notes in the year following Veterans' first MST screen. MEASURE(S): Any evidence of MST (positive MST screen or NLP concepts) and late MST disclosure (NLP concepts following a negative MST screen). Multivariable logistic regressions, stratified by sex, tested racial/ethnic differences in any MST evidence, and late disclosure. RESULTS: Of 6618 male and 6716 female Veterans with MST screen results, 1473 had a positive screen (68 male, 1%; 1405 female, 21%). Of those with a negative screen, 257 evidenced late MST disclosure by NLP (44 male, 39%; 213 female, 13%). Late MST disclosure was usually documented during mental health visits. There were no significant racial/ethnic differences in MST disclosure among men. Among women, blacks were less likely than whites to have any MST evidence (adjusted odds ratio=0.75). In the subsample with any MST evidence, black and Hispanic women were more likely than whites to disclose MST late (adjusted odds ratio=1.89 and 1.59, respectively). CONCLUSIONS: Combining NLP results with MST screen data facilitated the identification of under-reported sexual trauma experiences among men and racial/ethnic minority women.

The feasibility of web surveys for obtaining patient-reported outcomes from cancer survivors: a randomized experiment comparing survey modes and brochure enclosures.

BACKGROUND: Central cancer registries are often used to survey population-based samples of cancer survivors. These surveys are typically administered via paper or telephone. In most populations, web surveys obtain much lower response rates than paper surveys. This study assessed the feasibility of web surveys for collecting patient-reported outcomes via a central cancer registry. METHODS: Potential participants were sampled from Utah Cancer Registry records. Sample members were randomly assigned to receive a web or paper survey, and then randomized to either receive or not receive an informative brochure describing the cancer registry. We calculated adjusted risk ratios with 95% confidence intervals to compare response likelihood and the demographic profile of respondents across study arms. RESULTS: The web survey response rate (43.2%) was lower than the paper survey (50.4%), but this difference was not statistically significant (adjusted risk ratio = 0.88, 95% confidence interval = 0.72, 1.07). The brochure also did not significantly influence the proportion responding (adjusted risk ratio = 1.03, 95% confidence interval = 0.85, 1.25). There were few differences in the demographic profiles of respondents across the survey modes. Older age increased likelihood of response to a paper questionnaire but not a web questionnaire. CONCLUSIONS: Web surveys of cancer survivors are feasible without significantly influencing response rates, but providing a paper response option may be advisable particularly when surveying older individuals. Further examination of the varying effects of brochure enclosures across different survey modes is warranted.

Increased Health Care Utilization and Costs Among Veterans With a Positive Screen for Military Sexual Trauma.

BACKGROUND: The effects of sexual trauma on long-term health care utilization and costs are not well understood due to infrequent documentation of sexual trauma history in health care systems. The Veteran's Health Administration provides a unique opportunity to address this constraint as sexual trauma is actively screened for as part of routine care. METHODS: We used a retrospective cohort design to analyze Veteran's Health Administration mental health and medical service utilization and costs as a function of a positive screen for exposure to military sexual trauma (MST) among Veterans of recent conflicts in Iraq and Afghanistan. We computed adjusted 5-year estimates of overall utilization and costs, and utilization and costs determined not to be related to MST. RESULTS: The cohort included 426,223 men and 59,611 women. A positive MST screen was associated with 50% higher health care utilization and costs relative to a negative screen. Overall, a positive relative to negative MST screen was associated with a 5-year incremental difference of 34.6 encounters and $10,734 among women, and 33.5 encounters and $11,484 among men. After accounting for MST-related treatment, positive MST screen was associated with 11.9 encounters and $4803 among women, and 19.5 encounters and $8001 among men. CONCLUSIONS: Results demonstrate significant and consistent differences in health care utilization and costs between Veterans with a positive relative to negative MST screen. Even after accounting for MST-related care, a positive screen was associated with significantly higher utilization and costs. MST-related needs may be more readily recognized in women relative to men.

Patient-aligned Care Team Engagement to Connect Veterans Experiencing Homelessness With Appropriate Health Care.

BACKGROUND: Veterans experiencing homelessness frequently use emergency and urgent care (ED). OBJECTIVE: To examine the effect of a Patient-aligned Care Team (PACT) model tailored to the unique needs of Veterans experiencing homelessness (H-PACT) on frequency and type of ED visits in Veterans Health Administration (VHA) medical facilities. RESEARCH DESIGN: During a 12-month period, ED visits for 3981 homeless Veterans enrolled in (1) H-PACT at 20 VHA medical centers (enrolled) were compared with those of (2) 24,363 homeless Veterans not enrolled in H-PACT at the same sites (nonenrolled), and (3) 23,542 homeless Veterans at 12 non-H-PACT sites (usual care) using a difference-in-differences approach. MEASURE(S): The primary outcome was ED and other health care utilization and the secondary outcome was emergent (not preventable/avoidable) ED visits. RESULTS: H-PACT enrollees were predominantly white males with a higher baseline Charlson comorbidity index. In comparing H-PACT enrollees with usual care, there was a significant decrease in ED usage among the highest ED utilizers (difference-in-differences, -4.43; P<0.001). The decrease in ED visits were significant though less intense for H-PACT enrollees versus nonenrolled (-0.29, P<0.001). H-PACT enrollees demonstrated a significant increase in the proportion of ED care visits that were not preventable/avoidable in the 6 months after enrollment, but had stable rates of primary care, mental health, social work, and substance abuse visits over the 12 months. CONCLUSIONS: Primary care treatment engagement can reduce ED visits and increase appropriate use of ED services in VHA for Veterans experiencing homelessness, especially in the highest ED utilizers.

A pilot study of a heuristic algorithm for novel template identification from VA electronic medical record text.

RATIONALE: Templates in text notes pose challenges for automated information extraction algorithms. We propose a method that identifies novel templates in plain text medical notes. The identification can then be used to either include or exclude templates when processing notes for information extraction. METHODS: The two-module method is based on the framework of information foraging and addresses the hypothesis that documents containing templates and the templates within those documents can be identified by common features. The first module takes documents from the corpus and groups those with common templates. This is accomplished through a binned word count hierarchical clustering algorithm. The second module extracts the templates. It uses the groupings and performs a longest common subsequence (LCS) algorithm to obtain the constituent parts of the templates. The method was developed and tested on a random document corpus of 750 notes derived from a large database of US Department of Veterans Affairs (VA) electronic medical notes. RESULTS: The grouping module, using hierarchical clustering, identified 23 groups with 3 documents or more, consisting of 120 documents from the 750 documents in our test corpus. Of these, 18 groups had at least one common template that was present in all documents in the group for a positive predictive value of 78%. The LCS extraction module performed with 100% positive predictive value, 94% sensitivity, and 83% negative predictive value. The human review determined that in 4 groups the template covered the entire document, with the remaining 14 groups containing a common section template. Among documents with templates, the number of templates per document ranged from 1 to 14. The mean and median number of templates per group was 5.9 and 5, respectively. DISCUSSION: The grouping method was successful in finding like documents containing templates. Of the groups of documents containing templates, the LCS module was successful in deciphering text belonging to the template and text that was extraneous. Major obstacles to improved performance included documents composed of multiple templates, templates that included other templates embedded within them, and variants of templates. We demonstrate proof of concept of the grouping and extraction method of identifying templates in electronic medical records in this pilot study and propose methods to improve performance and scaling up.

Detecting the presence of an indwelling urinary catheter and urinary symptoms in hospitalized patients using natural language processing.

OBJECTIVE: To develop a natural language processing pipeline to extract positively asserted concepts related to the presence of an indwelling urinary catheter in hospitalized patients from the free text of the electronic medical note. The goal is to assist infection preventionists and other healthcare professionals in determining whether a patient has an indwelling urinary catheter when a catheter-associated urinary tract infection is suspected. Currently, data on indwelling urinary catheters is not consistently captured in the electronic medical record in structured format and thus cannot be reliably extracted for clinical and research purposes. MATERIALS AND METHODS: We developed a lexicon of terms related to indwelling urinary catheters and urinary symptoms based on domain knowledge, prior experience in the field, and review of medical notes. A reference standard of 1595 randomly selected documents from inpatient admissions was annotated by human reviewers to identify all positively and negatively asserted concepts related to indwelling urinary catheters. We trained a natural language processing pipeline based on the V3NLP framework using 1050 documents and tested on 545 documents to determine agreement with the human reference standard. Metrics reported are positive predictive value and recall. RESULTS: The lexicon contained 590 terms related to the presence of an indwelling urinary catheter in various categories including insertion, care, change, and removal of urinary catheters and 67 terms for urinary symptoms. Nursing notes were the most frequent inpatient note titles in the reference standard document corpus; these also yielded the highest number of positively asserted concepts with respect to urinary catheters. Comparing the performance of the natural language processing pipeline against the human reference standard, the overall recall was 75% and positive predictive value was 99% on the training set; on the testing set, the recall was 72% and positive predictive value was 98%. The performance on extracting urinary symptoms (including fever) was high with recall and precision greater than 90%. CONCLUSIONS: We have shown that it is possible to identify the presence of an indwelling urinary catheter and urinary symptoms from the free text of electronic medical notes from inpatients using natural language processing. These are two key steps in developing automated protocols to assist humans in large-scale review of patient charts for catheter-associated urinary tract infection. The challenges associated with extracting indwelling urinary catheter-related concepts also inform the design of electronic medical record templates to reliably and consistently capture data on indwelling urinary catheters.

Military sexual trauma is associated with post-deployment eating disorders among Afghanistan and Iraq veterans.

OBJECTIVE: Evaluate the association of military sexual trauma (MST) screen status with eating disorder diagnoses among veterans within 1- and 5-years after initiating Veterans Health Administration (VHA) care, and whether the association varied by sex. METHOD: Retrospective cohort study of US Afghanistan/Iraq veterans who used VHA services between FY 2004 and 2014 (N = 595,525). This study used VHA administrative data to assess the presence of eating disorder diagnoses in medical records within 1- and 5-years of initiating VHA care, and whether a positive screen for MST was associated with eating disorders. RESULTS: Three percent (n = 18,488) screened positive for MST. At 1- and 5-year follow up, 0.1% (n= 513, 74% female), and 0.2% (n = 504, 71% female) were diagnosed with an eating disorder, respectively. In regression models adjusted for demographic variables, military service, and psychiatric comorbidities, the presence of an eating disorder diagnosis was nearly two times higher among those with a positive screen for MST in the 1-year (adjusted odds ratio [AOR] = 1.94, 95% confidence interval [CI] = 1.57-2.40) and 5-year (AOR = 1.86, 95%CI = 1.49-2.32) cohorts. The increased likelihood conferred by MST for an eating disorder diagnosis was differentially stronger among male veterans than female veterans in the 1-year cohort only (AOR = 2.13, 95%CI = 1.01-4.50). DISCUSSION: Veterans with a positive screen for MST, especially male veterans, had a nearly two-fold increased likelihood of having an eating disorder diagnosis. Screening for eating disorders may be important in both male and female veterans who report MST.

Using network projections to explore co-incidence and context in large clinical datasets: Application to homelessness among U.S. Veterans.

INTRODUCTION: Network projections of data can provide an efficient format for data exploration of co-incidence in large clinical datasets. We present and explore the utility of a network projection approach to finding patterns in health care data that could be exploited to prevent homelessness among U.S. Veterans. METHOD: We divided Veteran ICD-9-CM (ICD9) data into two time periods (0-59 and 60-364days prior to the first evidence of homelessness) and then used Pajek social network analysis software to visualize these data as three different networks. A multi-relational network simultaneously displayed the magnitude of ties between the most frequent ICD9 pairings. A new association network visualized ICD9 pairings that greatly increased or decreased. A signed, subtraction network visualized the presence, absence, and magnitude difference between ICD9 associations by time period. RESULT: A cohort of 9468 U.S. Veterans was identified as having administrative evidence of homelessness and visits in both time periods. They were seen in 222,599 outpatient visits that generated 484,339 ICD9 codes (average of 11.4 (range 1-23) visits and 2.2 (range 1-60) ICD9 codes per visit). Using the three network projection methods, we were able to show distinct differences in the pattern of co-morbidities in the two time periods. In the more distant time period preceding homelessness, the network was dominated by routine health maintenance visits and physical ailment diagnoses. In the 59days immediately prior to the homelessness identification, alcohol related diagnoses along with economic circumstances such as unemployment, legal circumstances, along with housing instability were noted. CONCLUSION: Network visualizations of large clinical datasets traditionally treated as tabular and difficult to manipulate reveal rich, previously hidden connections between data variables related to homelessness. A key feature is the ability to visualize changes in variables with temporality and in proximity to the event of interest. These visualizations lend support to cognitive tasks such as exploration of large clinical datasets as a prelude to hypothesis generation.

Chronic multisymptom illness among female Veterans deployed to Iraq and Afghanistan.

BACKGROUND: Chronic multisymptom illness (CMI) may be more prevalent among female Operation Enduring Freedom/Operation Iraqi Freedom/Operation New Dawn (OEF/OIF/OND) deployed Veterans due to deployment-related experiences. OBJECTIVES: To investigate CMI-related diagnoses among female OEF/OIF/OND Veterans. RESEARCH DESIGN: We estimated the prevalence of the International Classification of Disease-9th edition-Clinical Modification coded CMI-related diagnoses of chronic fatigue syndrome, fibromyalgia (FM), and irritable bowel syndrome (IBS) among female OEF/OIF/OND Veterans with Veterans Health Administration (VHA) visits, FY2002-2012 (n=78,435). We described the characteristics of female Veterans with and without CMI-related diagnoses and VHA settings of first CMI-related diagnoses. RESULTS: The prevalence of CMI-related diagnoses among female OEF/OIF/OND Veterans was 6397 (8.2%), over twice as high as the prevalence 95,424 (3.9%) among the totality of female Veterans currently accessing VHA (P<0.01). There were statistically significant differences in age, education, marital status, military component, service branch, and proportions of those with depression and/or post-traumatic stress disorder diagnoses across females with and without CMI-related diagnoses. Diagnoses were mainly from primary care, women's health, and physical medicine and rehabilitation clinics. CONCLUSIONS: CMI-related diagnoses were more prevalent among female OEF/OIF/OND Veterans compared with all female Veterans who currently access VHA. Future studies of the role of mental health diagnoses as confounders or mediators of the association of OEF/OIF/OND deployment and CMI are warranted. These and other factors associated with CMI may provide a basis for enhanced screening to facilitate recognition of these conditions. Further work should evaluate models of care and healthcare utilization related to CMI in female Veterans.

Exploiting the UMLS Metathesaurus for extracting and categorizing concepts representing signs and symptoms to anatomically related organ systems.

OBJECTIVE: To develop a method to exploit the UMLS Metathesaurus for extracting and categorizing concepts found in clinical text representing signs and symptoms to anatomically related organ systems. The overarching goal is to classify patient reported symptoms to organ systems for population health and epidemiological analyses. MATERIALS AND METHODS: Using the concepts' semantic types and the inter-concept relationships as guidance, a selective portion of the concepts within the UMLS Metathesaurus was traversed starting from the concepts representing the highest level organ systems. The traversed concepts were chosen, filtered, and reviewed to obtain the concepts representing clinical signs and symptoms by blocking deviations, pruning superfluous concepts, and manual review. The mapping process was applied to signs and symptoms annotated in a corpus of 750 clinical notes. RESULTS: The mapping process yielded a total of 91,000 UMLS concepts (with approximately 300,000 descriptions) possibly representing physical and mental signs and symptoms that were extracted and categorized to the anatomically related organ systems. Of 1864 distinct descriptions of signs and symptoms found in the 750 document corpus, 1635 of these (88%) were successfully mapped to the set of concepts extracted from the UMLS. Of 668 unique concepts mapped, 603 (90%) were correctly categorized to their organ systems. CONCLUSION: We present a process that facilitates mapping of signs and symptoms to their organ systems. By providing a smaller set of UMLS concepts to use for comparing and matching patient records, this method has the potential to increase efficiency of information extraction pipelines.

Physical Activity Among Utah Cancer Survivors: Analysis From a Population-Based Statewide Survey.

BACKGROUND: Regular physical activity improves cancer survivors' health-related quality of life and physical function. We estimated the proportion of Utah cancer survivors meeting U.S. Department of Health and Human Services guidelines for weekly physical activity (aerobic plus strength exercise) and identify sociodemographic, cancer, and health-related factors associated with meeting guidelines. METHODS: Survivors randomly sampled from Utah Cancer Registry records were surveyed from 2018 to 2022 to ascertain physical activity. We calculated the percent of survivors meeting guidelines and conducted logistic regression to assess predictors of meeting guidelines. Analyses were weighted to account for complex survey sample design and nonresponse and age adjusted. RESULTS: Among Utah cancer survivors, 20.7% (95% CI, 18.5%-23.2%) met guidelines for both aerobic activity and strength exercise. 22.4% reported no aerobic exercise in a typical week, and 59.4% reported no strength exercise. Survivors 75 or older were less likely to meet physical activity guidelines than those under 55 (adjusted odds ratio: 0.40; 95% CI, 0.25-0.65). Survivors with a bachelor's degree or higher were more likely to meet physical activity guidelines than those without a college degree. Individuals with poorer overall health were less likely to report sufficient physical activity. Individuals treated with both chemotherapy and radiation had decreased odds of meeting guidelines compared to no treatment (adjusted odds ratio: 0.54; 95% CI, 0.29-0.99). CONCLUSIONS: Most Utah cancer survivors, and particularly those who received multiple modes of adjuvant treatment, are not participating in sufficient physical activity to improve longevity and quality of life after cancer.

Material financial hardship and insurance-related experiences among Utah's rural and urban cancer survivors.

PURPOSE: Describe material financial hardship (e.g., using savings, credit card debt), insurance, and access to care experienced by Utah cancer survivors; investigate urban-rural differences in financial hardship. METHODS: Cancer survivors were surveyed from 2018 to 2021 about their experiences with financial hardship, access to healthcare, and job lock (insurance preventing employment changes). Weighed percentage responses, univariable and multivariable logistic regression models for these outcomes compared differences in survivors living in rural and urban areas based on Rural-Urban Commuting Area Codes. RESULTS: The N = 1793 participants were predominantly Non-Hispanic White, female, and 65 or older at time of survey. More urban than rural survivors had a college degree (39.8% vs. 31.0%, p = 0.04). Overall, 35% of survivors experienced ≥ 1 financial hardship. In adjusted analyses, no differences were observed between urban and rural survivors for: material financial hardship, the overall amount of hardship reported, insurance status at survey, access to healthcare, or job lock. Hispanic rural survivors were less likely to report financial hardship than Hispanic urban survivors (odds ratio (OR) = 0.24, 95%CI = 0.08-0.73)). Rural survivors who received chemo/immune therapy as their only treatment were more likely to report at least one instance of financial hardship than urban survivors (OR = 2.72, 95%CI = 1.08-6.86). CONCLUSIONS: The relationship between rurality and financial hardship among survivors may be most burdensome for patients whose treatments require travel or specialty medication access. IMPLICATIONS FOR CANCER SURVIVORS: The impact of living rurally on financial difficulties after cancer diagnoses is complex. Features of rurality that may alter financial difficulty after a cancer diagnosis may vary geographically and instead of considering rurality as a stand-alone factor, these features should be investigated independently.

Cancer survivors' financial hardship and their caregivers' employment: results from a statewide survey.

PURPOSE: Many caregivers take paid and/or unpaid time off work, change from full-time to part-time, or leave the workforce. We hypothesized that cancer survivor-reported material hardship (e.g., loans, bankruptcy), behavioral hardship (e.g., skipping care/medication due to cost), and job lock (i.e., staying at a job for fear of losing insurance) would be associated with caregiver employment changes. METHODS: Adult cancer survivors (N = 627) were surveyed through the Utah Cancer Registry in 2018-2019, and reported whether their caregiver had changed employment because of their cancer (yes, no). Material hardship was measured by 9 items which we categorized by the number of instances reported (0, 1-2, and ≥ 3). Two items represented both behavioral hardship (not seeing doctor/did not take medication because of cost) and survivor/spouse job lock. Odds ratios (OR) were estimated using survey-weighted logistic regression to examine the association of caregiver employment changes with material and behavioral hardship and job lock, adjusting for cancer and sociodemographic factors. RESULTS: There were 183 (29.2%) survivors reporting their caregiver had an employment change. Survivors with ≥ 3 material hardships (OR = 3.13, 95%CI 1.68-5.83), who skipped doctor appointments (OR = 2.88, 95%CI 1.42-5.83), and reported job lock (OR = 2.05, 95%CI 1.24-3.39) and spousal job lock (OR = 2.19, 95%CI 1.17-4.11) had higher odds of caregiver employment changes than those without these hardships. CONCLUSIONS: Caregiver employment changes that occur because of a cancer diagnosis are indicative of financial hardship. IMPLICATIONS FOR CANCER SURVIVORS: Engaging community and hospital support for maintenance of stable caregiver employment and insurance coverage during cancer may lessen survivors' financial hardship.

Adherence to Guideline-Recommended cancer screening among Utah cancer survivors.

BACKGROUND: Adherence to cancer screening is important for cancer survivors because they are at high risk of subsequent cancer diagnoses or recurrence. We assessed adherence to breast, cervical, and colorectal cancer-(CRC)-screening guidelines and evaluated demographic disparities among a population-based sample of survivors. METHODS: A representative sample of Utah survivors diagnosed from 2012-2018 with any reportable invasive cancer was selected from central cancer registry records for a survey about survivorship needs. We estimated the proportion of eligible survivors adhering to U.S. Preventive Services Task Force screening guidelines and calculated risk ratios and 95% confidence intervals. Analyses were age-adjusted and weighted to account for sample design and nonresponse. RESULTS: And 1421 survivors completed the survey (57.2% response rate). Screening adherence was 74.4% for breast, 69.4% for cervical, and 79.7% for CRC. Rural residents were more likely to adhere to breast cancer screening than urban residents (86.1% vs. 72.7%; adjusted RR = 1.19, CI = 1.05, 1.36). Higher educational attainment was associated with increased adherence to cervical and colorectal cancer screening. Younger age was associated with greater adherence to cervical cancer screening (p = 0.006) but lower adherence to CRC screening (p = 0.003). CRC screening adherence was lower among the uninsured and those without a primary care provider (45.6%) compared to those with a regular provider (83.0%; adjusted RR = 0.57, CI = 0.42, 0.79). CONCLUSIONS: Surveys based on samples from central cancer registries can provide population estimates to inform cancer control. Findings demonstrate work is needed to ensure all Utah cancer survivors obtain recommended cancer screenings. Efforts should focus particularly on increasing uptake of breast and cervical cancer screening and reducing demographic disparities in CRC screening. PRECIS: Despite high risk for subsequent cancer diagnosis, Utah cancer survivors are not all obtaining recommended breast, cervical, and colorectal cancer screenings. This presents a significant healthcare gap.

Public health communication with frontline clinicians during the first wave of the 2009 influenza pandemic.

CONTEXT: During public health emergencies, office-based frontline clinicians are critical partners in the detection, treatment, and control of disease. Communication between public health authorities and frontline clinicians is critical, yet public health agencies, medical societies, and healthcare delivery organizations have all called for improvements. OBJECTIVES: Describe communication processes between public health and frontline clinicians during the first wave of the 2009 novel influenza A(H1N1) pandemic; assess clinicians' use of and knowledge about public health guidance; and assess clinicians' perceptions and preferences about communication during a public health emergency. DESIGN AND METHODS: During the first wave of the pandemic, we performed a process analysis and surveyed 509 office-based primary care providers in Utah. SETTING AND PARTICIPANTS: Public health and healthcare leaders from major agencies involved in emergency response in Utah and office-based primary care providers located throughout Utah. MAIN OUTCOME MEASURE(S): Communication process and information flow, distribution of e-mails, proportion of clinicians who accessed key Web sites at least weekly, clinicians' knowledge about recent guidance and perception about e-mail load, primary information sources, and qualitative findings from clinician feedback. RESULTS: The process analysis revealed redundant activities and messaging. The 141 survey respondents (28%) received information from a variety of sources: 68% received information from state public health; almost 100% received information from health care organizations. Only one-third visited a state public health or institutional Web site frequently enough (at least weekly) to obtain updated guidance. Clinicians were knowledgeable about guidance that did not change during the first wave; however, correct knowledge was lower after guidance changed. Clinicians felt overwhelmed by e-mail volume, preferred a single institutional e-mail for clinical guidance, and suggested that new information be concise and clearly identified. CONCLUSION: : Communication between public health, health care organizations and clinicians was redundant and overwhelming and can be enhanced considering clinician preferences and institutional communication channels.

Urgent care providers' knowledge and attitude about public health reporting and pertussis control measures: implications for informatics.

OBJECTIVES: We assessed urgent care providers' knowledge about public health reporting, guidelines, and actions for the prevention and control of pertussis; attitudes about public health reporting and population-based data; and perception of reporting practices in their clinic. METHODS: We identified the 106 providers (95% are physicians) employed in 28 urgent care clinics owned by Intermountain Healthcare located throughout Utah and Southern Idaho. We performed a descriptive, cross-sectional survey and assessed providers' knowledge, attitudes, beliefs, and behaviors associated with population-based data and public health mandates and recommendations. The online survey was completed between November 1, 2007, and February 29, 2008. RESULTS: Among 63 practicing urgent care providers (60% response rate), 19 percent knew that clinically diagnosed pertussis was reportable, and only half (52%) the providers correctly responded about current pertussis vaccination recommendations. Most (35%-78%) providers did not know the prevention and control measures performed by public health practitioners after reporting occurs, including contact tracing, testing, treatment, and prophylaxis. Half (48%) the providers did not know that health department personnel can prescribe antibiotics for contacts of a reported case, and only 22 percent knew that health department personnel may perform diagnostic testing on contacts. Attitudes about reporting are variable, and reporting responsibility is diffused. CONCLUSION: To improve our ability to meet public health goals, systems need to be designed that engage urgent care providers in the public health process, improve their knowledge and attitude about reporting, and facilitate the flow of information between urgent care and public health settings.