U.S. state policy contexts and mortality of working-age adults.

The rise in working-age mortality rates in the United States in recent decades largely reflects stalled declines in cardiovascular disease (CVD) mortality alongside rising mortality from alcohol-induced causes, suicide, and drug poisoning; and it has been especially severe in some U.S. states. Building on recent work, this study examined whether U.S. state policy contexts may be a central explanation. We modeled the associations between working-age mortality rates and state policies during 1999 to 2019. We used annual data from the 1999-2019 National Vital Statistics System to calculate state-level age-adjusted mortality rates for deaths from all causes and from CVD, alcohol-induced causes, suicide, and drug poisoning among adults ages 25-64 years. We merged that data with annual state-level data on eight policy domains, such as labor and taxes, where each domain was scored on a 0-1 conservative-to-liberal continuum. Results show that the policy domains were associated with working-age mortality. More conservative marijuana policies and more liberal policies on the environment, gun safety, labor, economic taxes, and tobacco taxes in a state were associated with lower mortality in that state. Especially strong associations were observed between certain domains and specific causes of death: between the gun safety domain and suicide mortality among men, between the labor domain and alcohol-induced mortality, and between both the economic tax and tobacco tax domains and CVD mortality. Simulations indicate that changing all policy domains in all states to a fully liberal orientation might have saved 171,030 lives in 2019, while changing them to a fully conservative orientation might have cost 217,635 lives.

US State Policies, Politics, and Life Expectancy.

Policy Points Changes in US state policies since the 1970s, particularly after 2010, have played an important role in the stagnation and recent decline in US life expectancy. Some US state policies appear to be key levers for improving life expectancy, such as policies on tobacco, labor, immigration, civil rights, and the environment. US life expectancy is estimated to be 2.8 years longer among women and 2.1 years longer among men if all US states enjoyed the health advantages of states with more liberal policies, which would put US life expectancy on par with other high-income countries. CONTEXT: Life expectancy in the United States has increased little in previous decades, declined in recent years, and become more unequal across US states. Those trends were accompanied by substantial changes in the US policy environment, particularly at the state level. State policies affect nearly every aspect of people's lives, including economic well-being, social relationships, education, housing, lifestyles, and access to medical care. This study examines the extent to which the state policy environment may have contributed to the troubling trends in US life expectancy. METHODS: We merged annual data on life expectancy for US states from 1970 to 2014 with annual data on 18 state-level policy domains such as tobacco, environment, tax, and labor. Using the 45 years of data and controlling for differences in the characteristics of states and their populations, we modeled the association between state policies and life expectancy, and assessed how changes in those policies may have contributed to trends in US life expectancy from 1970 through 2014. FINDINGS: Results show that changes in life expectancy during 1970-2014 were associated with changes in state policies on a conservative-liberal continuum, where more liberal policies expand economic regulations and protect marginalized groups. States that implemented more conservative policies were more likely to experience a reduction in life expectancy. We estimated that the shallow upward trend in US life expectancy from 2010 to 2014 would have been 25% steeper for women and 13% steeper for men had state policies not changed as they did. We also estimated that US life expectancy would be 2.8 years longer among women and 2.1 years longer among men if all states enjoyed the health advantages of states with more liberal policies. CONCLUSIONS: Understanding and reversing the troubling trends and growing inequalities in US life expectancy requires attention to US state policy contexts, their dynamic changes in recent decades, and the forces behind those changes. Changes in US political and policy contexts since the 1970s may undergird the deterioration of Americans' health and longevity.

Prioritized Research for the Prevention, Treatment, and Reversal of Chronic Disease: Recommendations From the Lifestyle Medicine Research Summit.

Declining life expectancy and increasing all-cause mortality in the United States have been associated with unhealthy behaviors, socioecological factors, and preventable disease. A growing body of basic science, clinical research, and population health evidence points to the benefits of healthy behaviors, environments and policies to maintain health and prevent, treat, and reverse the root causes of common chronic diseases. Similarly, innovations in research methodologies, standards of evidence, emergence of unique study cohorts, and breakthroughs in data analytics and modeling create new possibilities for producing biomedical knowledge and clinical translation. To understand these advances and inform future directions research, The Lifestyle Medicine Research Summit was convened at the University of Pittsburgh on December 4-5, 2019. The Summit's goal was to review current status and define research priorities in the six core areas of lifestyle medicine: plant-predominant nutrition, physical activity, sleep, stress, addictive behaviors, and positive psychology/social connection. Forty invited subject matter experts (1) reviewed existing knowledge and gaps relating lifestyle behaviors to common chronic diseases, such as cardiovascular disease, diabetes, many cancers, inflammatory- and immune-related disorders and other conditions; and (2) discussed the potential for applying cutting-edge molecular, cellular, epigenetic and emerging science knowledge and computational methodologies, research designs, and study cohorts to accelerate clinical applications across all six domains of lifestyle medicine. Notably, federal health agencies, such as the Department of Defense and Veterans Administration have begun to adopt "whole-person health and performance" models that address these lifestyle and environmental root causes of chronic disease and associated morbidity, mortality, and cost. Recommendations strongly support leveraging emerging research methodologies, systems biology, and computational modeling in order to accelerate effective clinical and population solutions to improve health and reduce societal costs. New and alternative hierarchies of evidence are also be needed in order to assess the quality of evidence and develop evidence-based guidelines on lifestyle medicine. Children and underserved populations were identified as prioritized groups to study. The COVID-19 pandemic, which disproportionately impacts people with chronic diseases that are amenable to effective lifestyle medicine interventions, makes the Summit's findings and recommendations for future research particularly timely and relevant.

Changes in midlife death rates across racial and ethnic groups in the United States: systematic analysis of vital statistics.

OBJECTIVE: To systematically compare midlife mortality patterns in the United States across racial and ethnic groups during 1999-2016, documenting causes of death and their relative contribution to excess deaths. DESIGN: Trend analysis of US vital statistics among racial and ethnic groups. SETTING: United States, 1999-2016. POPULATION: US adults aged 25-64 years (midlife). MAIN OUTCOME MEASURES: Absolute changes in mortality measured as average year-to-year change during 1999-2016 and 2012-16; excess deaths attributable to increasing mortality; and relative changes in mortality measured as relative difference between mortality in 1999 versus 2016 and the nadir year versus 2016, and the slope of modeled mortality trends for 1999-2016 and for intervals between joinpoints. RESULTS: During 1999-2016, all cause mortality in midlife increased not only among non-Hispanic (NH) whites but also among NH American Indians and Alaskan Natives. Although all cause mortality initially decreased among NH blacks, Hispanics, and NH Asians and Pacific Islanders, this trend ended in 2009-11. Drug overdoses were the leading cause of increased mortality in midlife in each population, but mortality also increased for alcohol related conditions, suicides, and organ diseases involving multiple body systems. Although midlife mortality among NH whites increased across a multitude of conditions, a similar trend affected non-white populations. Absolute (year-to-year) increases in midlife mortality among non-white populationsoften matched or exceeded those of NH whites, especially in 2012-16, when the rate of increase intensified for many causes of death. During 1999-2016, NH American Indians and Alaskan Natives experienced large increases in midlife mortality from 12 causes, not only drug overdoses (411.4%) but also hypertensive diseases (269.3%), liver cancer (115.1%), viral hepatitis (112.1%), and diseases of the nervous system (99.8%). NH blacks experienced increased midlife mortality from 17 causes, including drug overdoses (149.6%), homicides (21.4%), hypertensive diseases (15.5%), obesity (120.7%), and liver cancer (49.5%). NH blacks also experienced retrogression: after a period of stable or declining midlife mortality early in 1999-2016, death rates increased for alcohol related liver disease, chronic lower respiratory tract disease, suicides, diabetes, and pancreatic cancer. Among Hispanics, midlife mortality increased across 12 causes, including drug overdoses (80.0%), hypertensive diseases (40.6%), liver cancer (41.8%), suicides (21.9%), obesity (106.6%), and metabolic disorders (60.0%). Retrogression also occurred in this population; after a period of declining mortality, death rates increased for alcohol related liver disease, mental and behavioral disorders involving psychoactive substances, and homicides. NH Asians and Pacific Islanders were least affected by this trend but also experienced increases in midlife mortality from drug overdoses (300.6%), alcohol related liver disease (62.9%), hypertensive diseases (28.3%), and brain cancer (56.6%). The suicide rate in this group increased by 29.7% after 2001. The relative increase in US midlife mortality differed by sex and geography. For example, the relative increase in fatal drug overdoses was greater among women than among men. Although the relative increase in midlife mortality was generally greater in non-metropolitan (ie, rural) areas, the relative increase in drug overdoses among NH whites and Hispanics was greatest in suburban fringe areas of large cities, and among NH blacks was greatest in small cities. CONCLUSIONS: Mortality in midlife in the US has increased across racial-ethnic populations for a variety of conditions, especially in recent years, offsetting years of progress in lowering mortality rates. This reversal carries added consequences for racial groups with high baseline mortality rates, such as for NH blacks and NH American Indians and Alaskan Natives. That death rates are increasing throughout the US population for dozens of conditions signals a systemic cause and warrants prompt action by policy makers to tackle the factors responsible for declining health in the US.

Engaging Patients in Decisions About Cancer Screening: Exploring the Decision Journey Through the Use of a Patient Portal.

INTRODUCTION: Engaging patients to make informed choices is paramount but difficult in busy practices. This study sought to engage patients outside the clinical setting to better understand how they approach cancer screening decisions, including their primary concerns and their preferences for finalizing their decision. METHODS: Twelve primary care practices offering patients an online personal health record invited eligible patients to complete a 17-item online interactive module. Among 11,458 registered users, invitations to complete the module were sent to adults aged 50-74 years who were overdue for colorectal cancer screening and to women aged 40-49 years and men aged 55-69 who had not undergone a recent mammogram or prostate-specific antigen test, respectively. RESULTS: The module was started by 2,355 patients and completed by 903 patients. Most respondents (76.8%) knew they were eligible for screening. Preferred next steps were talking to the clinician (76.6%), reading/research (28.6%), and consulting trusted friends/family (16.4%). Priority topics included how much screening improves life expectancy, comparative test performance, and the prevalence/health risks of the cancer. Leading fears were getting cancer/delayed detection (79.2%), abnormal results (40.5%), and testing complications (39.1%), the last referring to false test results, medical complications, or unnecessary treatments. Men eligible for prostate-specific antigen screening were more likely than women eligible for mammography to express concerns about testing complications and to prioritize weighing pros and cons over gut feelings (p<0.05). CONCLUSIONS: Although this sample was predisposed to screening, most patients wanted help in finalizing their decision. Many wanted to weigh the pros and cons and expressed fears of potential harms from screening. Understanding how patients approach decisions may help design more effective engagement strategies.

Harnessing Information Technology to Inform Patients Facing Routine Decisions: Cancer Screening as a Test Case.

PURPOSE: Technology could transform routine decision making by anticipating patients' information needs, assessing where patients are with decisions and preferences, personalizing educational experiences, facilitating patient-clinician information exchange, and supporting follow-up. This study evaluated whether patients and clinicians will use such a decision module and its impact on care, using 3 cancer screening decisions as test cases. METHODS: Twelve practices with 55,453 patients using a patient portal participated in this prospective observational cohort study. Participation was open to patients who might face a cancer screening decision: women aged 40 to 49 who had not had a mammogram in 2 years, men aged 55 to 69 who had not had a prostate-specific antigen test in 2 years, and adults aged 50 to 74 overdue for colorectal cancer screening. Data sources included module responses, electronic health record data, and a postencounter survey. RESULTS: In 1 year, one-fifth of the portal users (11,458 patients) faced a potential cancer screening decision. Among these patients, 20.6% started and 7.9% completed the decision module. Fully 47.2% of module completers shared responses with their clinician. After their next office visit, 57.8% of those surveyed thought their clinician had seen their responses, and many reported the module made their appointment more productive (40.7%), helped engage them in the decision (47.7%), broadened their knowledge (48.1%), and improved communication (37.5%). CONCLUSIONS: Many patients face decisions that can be anticipated and proactively facilitated through technology. Although use of technology has the potential to make visits more efficient and effective, cultural, workflow, and technical changes are needed before it could be widely disseminated.

Methods for Evaluating Respondent Attrition in Web-Based Surveys.

BACKGROUND: Electronic surveys are convenient, cost effective, and increasingly popular tools for collecting information. While the online platform allows researchers to recruit and enroll more participants, there is an increased risk of participant dropout in Web-based research. Often, these dropout trends are simply reported, adjusted for, or ignored altogether. OBJECTIVE: To propose a conceptual framework that analyzes respondent attrition and demonstrates the utility of these methods with existing survey data. METHODS: First, we suggest visualization of attrition trends using bar charts and survival curves. Next, we propose a generalized linear mixed model (GLMM) to detect or confirm significant attrition points. Finally, we suggest applications of existing statistical methods to investigate the effect of internal survey characteristics and patient characteristics on dropout. In order to apply this framework, we conducted a case study; a seventeen-item Informed Decision-Making (IDM) module addressing how and why patients make decisions about cancer screening. RESULTS: Using the framework, we were able to find significant attrition points at Questions 4, 6, 7, and 9, and were also able to identify participant responses and characteristics associated with dropout at these points and overall. CONCLUSIONS: When these methods were applied to survey data, significant attrition trends were revealed, both visually and empirically, that can inspire researchers to investigate the factors associated with survey dropout, address whether survey completion is associated with health outcomes, and compare attrition patterns between groups. The framework can be used to extract information beyond simple responses, can be useful during survey development, and can help determine the external validity of survey results.

Authentic Engagement Of Patients And Communities Can Transform Research, Practice, And Policy.

The engagement of patients and the public is increasingly important in the design and conduct of research. Some researchers still cling to the outdated notion that laypeople cannot contribute meaningfully to science; for some, "community engagement" is another term for recruiting patients for trials. Authentic engagement encompasses far more, involving stakeholders as full partners in all phases of research, as research funders increasingly require. Such engagement, although challenging, can enhance the quality and impact of studies on many levels, from ensuring that data are relevant to users' needs to elevating the moral plane of research by showing respect to patients and vulnerable populations. We share examples from our work, including the engagement of patients in a study of cancer screening decisions and the engagement of inner-city residents in addressing social determinants of health. These engagement principles are of growing relevance to health systems and policy makers responsible for population health.

A comparison of web-based versus print-based decision AIDS for prostate cancer screening: participants' evaluation and utilization.

BACKGROUND: Patient decision aids facilitate informed decision making for medical tests and procedures that have uncertain benefits. OBJECTIVE: To describe participants' evaluation and utilization of print-based and web-based prostate cancer screening decision aids that were found to improve decisional outcomes in a prior randomized controlled trial. DESIGN: Men completed brief telephone interviews at baseline, one month, and 13 months post-randomization. PARTICIPANTS: Participants were primary care patients, 45-70 years old, who received the print-based (N = 628) or web-based decision aid (N = 625) and completed the follow-up assessments. MAIN MEASURES: We assessed men's baseline preference for web-based or print-based materials, time spent using the decision aids, comprehension of the overall message, and ratings of the content. KEY RESULTS: Decision aid use was self-reported by 64.3 % (web) and 81.8 % (print) of participants. Significant predictors of decision aid use were race (white vs. non-white, OR = 2.43, 95 % CI: 1.77, 3.35), higher education (OR = 1.68, 95 % CI: 1.06, 2.70) and trial arm (print vs. web, OR = 2.78, 95 % CI: 2.03, 3.83). Multivariable analyses indicated that web-arm participants were more likely to use the website when they preferred web-based materials (OR: 1.91, CI: 1.17, 3.12), whereas use of the print materials was not significantly impacted by a preference for print-based materials (OR: 0.69, CI: 0.38, 1.25). Comprehension of the decision aid message (i.e., screening is an individual decision) did not significantly differ between arms in adjusted analyses (print: 61.9 % and web: 68.2 %, p = 0.42). CONCLUSIONS: Decision aid use was independently influenced by race, education, and the decision aid medium, findings consistent with the 'digital divide.' These results suggest that when it is not possible to provide this age cohort with their preferred decision aid medium, print materials will be more highly used than web-based materials. Although there are many advantages to web-based decision aids, providing an option for print-based decision aids should be considered.

MyPreventiveCare: implementation and dissemination of an interactive preventive health record in three practice-based research networks serving disadvantaged patients--a randomized cluster trial.

BACKGROUND: Evidence-based preventive services for early detection of cancer and other health conditions offer profound health benefits, yet Americans receive only half of indicated services. Policy initiatives promote the adoption of information technologies to engage patients in care. We developed a theory-driven interactive preventive health record (IPHR) to engage patients in health promotion. The model defines five levels of functionality: (1) collecting patient information, (2) integrating with electronic health records (EHRs), (3) translating information into lay language, (4) providing individualized, guideline-based clinical recommendations, and (5) facilitating patient action. It is hypothesized that personal health records (PHRs) with these higher levels of functionality will inform and activate patients in ways that simpler PHRs cannot. However, realizing this vision requires both technological advances and effective implementation based upon clinician and practice engagement. METHODS/DESIGN: We are starting a two-phase, mixed-method trial to evaluate whether the IPHR is scalable across a large number of practices and how its uptake differs for minority and disadvantaged patients. In phase 1, 40 practices from three practice-based research networks will be randomized to add IPHR functionality to their PHR versus continue to use their existing PHR. Throughout the study, we will engage intervention practices to locally tailor IPHR content and learn how to integrate new functions into their practice workflow. In phase 2, the IPHR to all nonintervention practices to observe whether the IPHR can be implemented more broadly (Scalability). Phase 1 will feature an implementation assessment in intervention practices, based on the RE-AIM model, to measure Reach (creation of IPHR accounts by patients), Adoption (practice decision to use the IPHR), Implementation (consistency, fidelity, barriers, and facilitators of use), and Maintenance (sustained use). The incremental effect of the IPHR on receipt of cancer screening tests and shared decision-making compared to traditional PHRs will assess Effectiveness. In phase 2, we will assess similar outcomes as phase 1 except for effectiveness. DISCUSSION: This study will yield information about the effectiveness of new health information technologies designed to actively engage patients in their care as well as information about how to effectively implement and disseminate PHRs by engaging clinicians. TRIAL REGISTRATION: ClinicalTrials.gov: NCT02138448.

Low-dose computed tomography screening for lung cancer: how strong is the evidence?

In 2013, the US Preventive Services Task Force (USPSTF) recommended low-dose computed tomographic (CT) screening for high-risk current and former smokers with a B recommendation (indicating a level of certainty that it offered moderate to substantial net benefit). Under the Affordable Care Act, the USPSTF recommendation requires commercial insurers to fully cover low-dose CT. The Centers for Medicare & Medicaid Services (CMS) is now considering whether to also offer coverage for Medicare beneficiaries. Although the National Lung Screening Trial (NLST) demonstrated the efficacy of low-dose CT, implementation of national screening may be premature. The magnitude of benefit from routine screening is uncertain; estimates are based on data from a single study and simulation models commissioned by the USPSTF. The potential harms-which could affect a large population-include false-positive results, anxiety, radiation exposure, diagnostic workups, and the resulting complications. It is unclear if routine screening would result in net benefit or net harm. The NLST may not be generalizable to a national screening program for the Medicare age group because 73% of NLST participants were younger than 65 years. Moreover, screening outside of trial conditions is less likely to be restricted to high-risk smokers and qualified imaging centers with responsible referral protocols. Until better data are available for older adults who are screened in ordinary (nontrial) community settings, CMS should postpone coverage of low-dose CT screening for Medicare beneficiaries.

Decision making in prostate cancer screening using decision aids vs usual care: a randomized clinical trial.

IMPORTANCE: The conflicting recommendations for prostate cancer (PCa) screening and the mixed messages communicated to the public about screening effectiveness make it critical to assist men in making informed decisions. OBJECTIVE: To assess the effectiveness of 2 decision aids in helping men make informed PCa screening decisions. DESIGN, SETTING, AND PARTICIPANTS: A racially diverse group of male outpatients aged 45 to 70 years from 3 sites were interviewed by telephone at baseline, 1 month, and 13 months, from 2007 through 2011. We conducted intention-to-treat univariate analyses and multivariable linear and logistic regression analyses, adjusting for baseline outcome measures. INTERVENTION: Random assignment to print-based decision aid (n = 628), web-based interactive decision aid (n = 625), or usual care (UC) (n = 626). MAIN OUTCOMES AND MEASURES: Prostate cancer knowledge, decisional conflict, decisional satisfaction, and whether participants underwent PCa screening. RESULTS: Of 4794 eligible men approached, 1893 were randomized. At each follow-up assessment, univariate and multivariable analyses indicated that both decision aids resulted in significantly improved PCa knowledge and reduced decisional conflict compared with UC (all P <.001). At 1 month, the standardized mean difference (Cohen's d) in knowledge for the web group vs UC was 0.74, and in the print group vs UC, 0.73. Decisional conflict was significantly lower for web vs UC (d = 0.33) and print vs UC (d = 0.36). At 13 months, these differences were smaller but remained significant. At 1 month, high satisfaction was reported by significantly more print (60.4%) than web participants (52.2%; P = .009) and significantly more web (P = .001) and print (P = .03) than UC participants (45.5%). At 13 months, differences in the proportion reporting high satisfaction among print (55.7%) compared with UC (49.8%; P = .06) and web participants (50.4%; P = .10) were not significant. Screening rates at 13 months did not differ significantly among groups. CONCLUSIONS AND RELEVANCE: Both decision aids improved participants' informed decision making about PCa screening up to 13 months later but did not affect actual screening rates. Dissemination of these decision aids may be a valuable public health tool. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00196807.

Interactive preventive health record to enhance delivery of recommended care: a randomized trial.

PURPOSE: Americans receive only one-half of recommended preventive services. Information technologies have been advocated to engage patients. We tested the effectiveness of an interactive preventive health record (IPHR) that links patients to their clinician's record, explains information in lay language, displays tailored recommendations and educational resources, and generates reminders. METHODS: This randomized controlled trial involved 8 primary care practices. Four thousand five hundred patients were randomly selected to receive a mailed invitation to use the IPHR or usual care. Outcomes were measured using patient surveys and electronic medical record data and included IPHR use and service delivery. Comparisons were made between invited and usual-care patients and between users and nonusers among those invited to use the IPHR. RESULTS: At 4 and 16 months, 229 (10.2%) and 378 (16.8%) of invited patients used the IPHR. The proportion of patients up-to-date with all services increased between baseline and 16 months by 3.8% among intervention patients (from 11.4% to 15.2%, P <.001) and by 1.5% among control patients (from 11.1% to 12.6%, P = .07), a difference of 2.3% (P = .05). Greater increases were observed among patients who used the IPHR. At 16 months, 25.1% of users were up-to-date with all services, double the rate among nonusers. At 4 months, delivery of colorectal, breast, and cervical cancer screening increased by 19%, 15%, and 13%, respectively, among users. CONCLUSIONS: Information systems that feature patient-centered functionality, such as the IPHR, have potential to increase preventive service delivery. Engaging more patients to use systems could have important public health benefits.

Citizen-centered health promotion: building collaborations to facilitate healthy living.

Unhealthy behaviors, notably tobacco use; unhealthy diets; and inadequate physical activity are major contributors to chronic disease in the U.S. and are more prevalent among socioeconomically disadvantaged groups. Differences in the prevalence of unhealthy behaviors among communities with different physical, social, and economic resources suggest that contextual environmental factors play an important causal role. Yet health promotion interventions often are undertaken in isolation and with inadequate attention to these holistic social and economic influences on lifestyle. For example, clinicians' advice to patients to stop smoking or lose weight can help motivate people to change behaviors, but their ability to take subsequent action can benefit from coordination with community-based and public health programs that offer intensive counseling services, and from modified environmental conditions to facilitate behavior change where people live, work, learn, and play. Reshaping these environmental conditions to support healthier living is the subject of six recommendations from the Robert Wood Johnson Foundation Commission to Build a Healthier America. Changing the conditions of daily life to make them conducive to healthy behaviors--what is here called citizen-centered health promotion--requires a concerted effort by clinical, educational, business, civic and governmental partners within communities. Linkages among clinical practices and community-based programs have been demonstrated to be effective, but moving from demonstration projects to sustainable community collaborations nationwide will require a proactive effort to establish the necessary infrastructure and financing.

Is discussion of colorectal cancer screening options associated with heightened patient confusion?

BACKGROUND: Clinical guidelines recommend offering patients options for colorectal cancer (CRC) screening, but the modalities vary by frequency, accuracy, preparations, discomfort, and cost, which may cause confusion and reduce screening rates. We examined whether patients reported confusion about the options and whether confusion was associated with socio-demographic characteristics, number of options discussed, and adherence. METHODS: Patients ages 50 to 75 years who had visited a clinician within 2 years were randomly selected for a cross-sectional study (n = 6,100). A questionnaire mailed in 2007 asked the following: whether a clinician had ever discussed CRC screening options; which of four recommended tests (i.e., fecal occult blood testing, flexible sigmoidoscopy, colonoscopy, and barium enema) were presented; and whether the options were confusing. Analyses were restricted to respondents who reported discussing one or more screening options (n = 1,707). Weighted frequencies were calculated and multivariate logistic regression was done. RESULTS: The sample was 55.5% female, 15.6% African American, and 83.2% adherent to screening recommendations, and 56.0% had discussed two or more screening options. In adjusted analyses, nonadherent patients reported greater confusion than adherent patients (P < 0.01). Adults who discussed two or more options were 1.6 times more likely to be confused than those who discussed one option [95% confidence interval (CI), 1.08-2.26]. Patients who reported being confused were 1.8 times more likely to be nonadherent to screening than those who did not (95% CI, 1.14-2.75). CONCLUSIONS: Our study provides the first empirical evidence linking multiple options with confusion and confusion with screening adherence. IMPACT: Confusion may act as a barrier to screening and should be considered in public health messages and interventions.

Patient-reported barriers to colorectal cancer screening: a mixed-methods analysis.

BACKGROUND: Barriers experienced by patients influence the uptake of colorectal cancer (CRC) screening. Prior research has quantified how often patients encounter these challenges but has generally not revealed their complex perspective and experience with barriers. PURPOSE: This mixed-methods study was conducted to understand current perspectives on CRC screening. METHODS: A two-part, mixed-methods study was conducted of primary care patients recruited from Virginia Ambulatory Care Outcomes Research Network practices. First, in June-July 2005 a survey was mailed to 660 patients aged 50-75 years posing an open-ended question about "the most important barrier" to CRC screening. Second, beginning in October 2005, seven gender- and largely race-specific focus groups involving 40 patients aged 45-75 years were conducted. Beginning in October 2005, survey verbatim responses were coded and quantitatively analyzed and focus group transcripts were qualitatively analyzed. RESULTS: Responses to the open-ended survey question, answered by 74% of respondents, identified fear and the bowel preparation as the most important barriers to screening. Only 1.6% of responses cited the absence of physician advice. Focus group participants cited similar issues and other previously reported barriers, but their remarks exposed the intricacies of complex barriers, such as fear, lack of information, time, the role of physicians, and access to care. Participants also cited barriers that have little documentation in the literature, such as low self-worth, "para-sexual" sensitivities, fatalism, negative past experiences with testing, and skepticism about the financial motivation behind screening recommendations. CONCLUSIONS: Mixed-methods analysis helps to disaggregate the complex nuances that influence patient behavior. In the present study, patients explained the web of influences on knowledge, motivation, and ability to undergo CRC screening, which clinicians and policymakers should consider in designing interventions to increase the level of screening.

The relative importance of patient-reported barriers to colorectal cancer screening.

BACKGROUND: Colorectal cancer (CRC) screening rates are suboptimal. The most important barriers identified by patients are poorly understood. A comprehensive assessment of barriers to all recommended modalities is needed. METHODS: In 2007, a questionnaire was mailed to 6100 patients, aged 50-75 years, from 12 family medicine practices in the Virginia Ambulatory Care Outcomes Research Network. People aged 65-75 years and African Americans were oversampled. Patients were asked to rate 19-21 barriers to each of four recommended tests. In 2008, responses were coded on a 5-point scale; higher scores reflected stronger barrier endorsement. RESULTS: The response rate was 55% (n=3357). Approximately 40% of respondents were aged >/=65 years, 30% were African-American, and 73% were adherent to screening. A clinician's failure to suggest screening and not knowing testing was necessary received the highest mean scores as barriers. Financial concerns and misconceptions were also cited. Barrier scores differed depending on whether respondents were never screened, overdue for screening, or adherent to guidelines. The top five barriers for each modality included test-specific barriers (e.g., handling stool, bowel preparation), which often outranked generic barriers to screening. Not knowing testing was necessary was a top barrier for all tests but colonoscopy. CONCLUSIONS: Although physician advice and awareness of the need for screening are important, barriers to screening are not homogenous across tests, and test-specific barriers warrant consideration in designing strategies to improve screening rates. Barrier scores differ by screening status, highlighting the need to address prior screening experience. Evidence that patients are more familiar with colonoscopy than with other modalities suggests an opportunity to improve screening rates by educating patients about alternative tests.