Chronic obstructive pulmonary disease (COPD) is a complex lung disease characterized by airways inflammation and lung tissue remodeling, leading to loss of small airways and emphysema.1 It is the fourth leading cause of death in the United States, responsible for more than 150,000 deaths yearly.2 More than 15 million people have been diagnosed with COPD and, compared to 4.7% in large metropolitan areas, a staggering 8.2% of those living in rural areas have the disease.2 That translates to about 3.5 million people, and it does not include the estimated additional 1 million undiagnosed.2, 3 Notably, even among never-smokers, rural residence and poverty are risk factors for COPD.4 The disease also takes a heavy financial toll: national medical costs associated with COPD are projected to increase from $32.1 billion in 2010 to $49 billion in 2020.5 To tackle COPD, Congress requested that federal and nonfederal partners develop a plan and identify the specific efforts patients, advocates, health care professionals, educators, payors, researchers, the biomedical industry, and federal agencies must take to change the course of COPD. The COPD National Action Plan (CNAP) was released during the 2017 American Thoracic Society International Conference.6 To address COPD in rural populations through the lens of the CNAP, the Health Resources and Services Administration (HRSA) and the National Heart, Lung, and Blood Institute (NHLBI) convened a workshop of rural health representatives and COPD stakeholders in Bethesda, Maryland, on March 19, 2018, to discuss ways to implement each of the 5 goals of the CNAP in rural settings. Below is a summary of the discussions held at the meeting. Educating patients and their caregivers (usually family members) about COPD is the cornerstone of Goal 1. While patient education generally happens in health care facilities, COPD awareness, diagnosis, and care for rural populations also need to reach locations unique to rural settings. Partnering with national rural-focused entities such as the American Agri-Women (AAW) Association, the National Future Farmers of America Organization, Sigma Alpha (a professional agricultural business sorority), and other members of the Consortium of Collegiate Agricultural Organizations can offer additional opportunities to educate about COPD and its prevention. Recognizing rural heterogeneity, culturally, linguistically, and content-appropriate messages need to be crafted for each targeted region. To be sustainable, these programs must develop—with adequate regional, state, and national assistance—local champions. Support could come from groups such as the COPD Foundation, the American Lung Association (ALA), AAW, the National Rural Health Association (NRHA), HRSA's Federal Office of Rural Health Policy, the Veteran Administrations' Office of Rural Health, the Centers for Medicare and Medicaid Services, the states' Primary Care Associations (PCAs), the National Association of Rural Health Clinics, and the National Association of Community Health Centers. Goal 2 of the CNAP stresses the importance of developing and disseminating patient-centric, clinical practice guidelines that health care professionals can use to deliver COPD care. These will help primary care clinicians who are the providers of care to most people with COPD in rural areas, as these communities often lack pulmonologists.7 In rural settings, telehealth, telemedicine, telemonitoring, and telementoring can help relieve isolation, support appropriate education, and assist in patient care. Addressing reimbursement issues to support multidisciplinary team care to incentivize cost-effective interventions, such as pulmonary rehabilitation (PR), is also important. Additional resources available are the pocket guide based on the Global initiative for chronic Obstructive Lung Disease guidelines,8 and the COPD Foundation pocket guide and app.9 Electronic health records, such as those used in the VA's electronic health record (Vista/CPRS) system, also hold promise.10 Structured longitudinal telementoring of rural health care professionals, including medical assistants, respiratory therapists, and home health care professionals, could create a virtual "community of practice" that would facilitate COPD team management in rural areas. The strategy of "moving knowledge" instead of "moving patients" has been shown to be effective in managing other chronic diseases in medically underserved areas using the Extension for Community Health Outcomes model for telementoring.11, 12 Many rural areas have been federally designated as medically underserved in part because primary care there is provided by other health professionals, including nurse practitioners and physician assistants.13 Increasing the availability of other professionals, such as respiratory therapists, would provide important services to patients and families affected by COPD such as training in the use of inhalers,14 and delivery of PR, which improves patient clinical COPD outcomes but requires continued physical activity after initial program completion.15 These therapies are underutilized due to insufficient funding, resources, and reimbursement but also lack of awareness and knowledge by health care professionals, payors, and patients,15 and their delivery is often complicated by the long distances that rural COPD patients must travel to access them.16 Programs such as the Appalachian Pulmonary Health Project offer an example of successful delivery of a comprehensive outpatient PR in rural settings.17 PR structures also offer the opportunity to deliver tobacco cessation interventions and pulmonary function testing such as spirometry, which plays a necessary role in the diagnosis and assessment of severity of COPD.18 Potential alternatives, such as rehabilitation at home or telehealth rehabilitation with remote online supervision, are currently being tested.19 Goal 3 of the CNAP stresses the importance of delivering interventions based on evidence from the regions and populations to be served. Access to timely, comprehensive COPD data is foundational to identifying where to best target resources for rural patients' and health care providers' education, worksite wellness programs, and prevention programs, and to reduce disease burden. Although national COPD data are available, most rural-specific data are not easily accessible at the local level. In addition, because the Centers for Disease Control and Prevention (CDC) does not fund COPD programs, state and local public health departments have no local CDC-generated data to use. An alternative source for gathering COPD data in rural communities is through accountable care organizations (ACOs).20, 21 Because COPD-related health care costs due to disease flare-ups are very high (e.g., they require more ED visits, hospital admissions, and readmissions), ACOs are demonstrating that it is cost effective to monitor and manage COPD to prevent or minimize acute episodes. The ACO data that are used to monitor COPD care and patients' outcomes could be aggregated to support collaborative efforts in rural communities. Existing annual databases can also provide rural data on COPD. Public access to http://wonder.cdc.gov provides annual death certificate information from the National Vital Statistics System, run by the National Center for Health Statistics. County-level prevalence of COPD and other chronic conditions among annual Medicare fee-for-service enrollees may be accessed at http://www.cms.gov. Urban-rural categories data can be analyzed using the Federal Information Processing Specification county code.22 Address locations of providers and specialists who submit Medicare and Medicaid claims may be obtained from the National Provider Identifier Registry (http://www.cms.gov). Self-reported doctor-diagnosed COPD, other chronic diseases, risk factors, and sociodemographic characteristics from the annual Behavioral Risk Factor Surveillance System may be obtained at www.cdc.gov/brfss and www.cdc.gov/cdi. To facilitate the analysis and use of these fragmented data sources, it is imperative to continue to create accessible linkages to the rural communities, and a CDC data portal with downloadable county-level COPD data would be useful for promoting rural efforts. Goal 4 of the CNAP aims at fostering all aspects of COPD research. For example, cigarette smoking is a prime target for intervention not only because it is responsible for 75% of COPD cases nationally, but also because it disproportionately impacts rural residents.23 Less access to public education programs that teach the dangers of smoking and its connection with COPD must be corrected through the implementation of tobacco use prevention and cessation programs.24, 25 Additionally, up to 25% of patients with COPD report having never smoked,26 and data collected from these individuals identify occupational and environmental exposures such as passive smoke, biomass fuels used for cooking and heating, mining dusts, or agricultural biodusts.26 Research is needed to further clarify the roles of additional agents as possible causes of airflow obstruction and lung tissue damage and to document the effectiveness of exposure reduction strategies in preventing COPD.27-29 To this end, the participation of individuals from rural communities in registries and clinical trials conducted in rural settings is key to delivering meaningful results. Research on evidence-based models for preventing, diagnosing, and treating COPD in rural practices can be facilitated, for example, through partnerships between COPD researchers and Primary Care Practice-based Research Networks (PBRNs).30 Currently, 5 PBRNs are participating in the NHLBI-funded CAPTURE COPD study aimed at validating the sensitivity, specificity, and predictive value of a 5-item survey and a peak expiratory flow measurement to identify patients with undiagnosed, clinically significant COPD.31 Additional opportunities to facilitate and enhance COPD research in rural settings could stem from public-private partnerships, including those with industry, and the use of different models of diagnostic and therapeutic delivery. Text message-based smoking cessation interventions are effective and can be beneficial for rural residents,32 and telemedicine is an attractive option for providing COPD care to rural patients.33 PR, including home-based PR, could also be delivered through telehealth.19, 34 Local health care professionals and national patient advocacy groups could help increase participation of rural residents in research and clinical trials.35 Goal 5 calls for implementation of the CNAP, including in rural settings, and translating national COPD strategies into state- and community-based initiatives. This requires a multipronged approach and sustained efforts from all interested parties. Federal agencies that provide health care-related grants to states, such as NIH, HRSA, CDC, Patient-Centered Outcomes Research Institute, the Agency for Healthcare Research and Quality, the US Department of Agriculture, and others, must integrate COPD into their programs, and they need to fully engage state governments and agencies in COPD initiatives. In turn, states could be required or incentivized to engage in interagency collaborations to address COPD. Barriers to collaboration need to be removed to facilitate partnerships, including those with drug and device industries. These stipulations must be reflected in funding announcements, along with the economic, cultural, social, geographic, and demographic characteristics of rural communities. Rural patients could be organized around local chapters of national support groups, such as the ALA Better Breathers Clubs, the COPD Foundation State Captains and Harmonicas for Health, and other groups sponsored by existing trusted partners. State and federal health services agencies could educate and engage existing health and social service advocacy organizations (e.g., the NRHA, state rural health associations, state hospital associations, state offices of rural health, PCAs, county medical associations, and Community Action Agencies) to incorporate COPD in their messaging. Medicare Rural Hospital Flexibility grant funding could be leveraged to engage and track patients with COPD. State, local, and tribal health departments and organizations could prioritize COPD education and referrals, and health centers could institute COPD measures in the set collected by Federally Qualified Health Centers and Rural Health Clinics. Notably, a demonstrated return on investment (ROI) could pave the way for increased job opportunities in rural settings (e.g., for respiratory therapists, nurses, pharmacists, community health workers, physician assistants). Finally, organizations such as the National Governors Association and the National Conference of State Legislatures should recognize the significance of COPD, encourage governors and state legislators to pass legislation that addresses the disease, and ensure that each state has a well-articulated COPD plan that outlines specific strategies, including those addressing workforce shortages. COPD is a common, underdiagnosed, undertreated, and devastating chronic lung disease prevalently affecting underserved communities such as those of rural America. A concerted effort from all interested parties will make a difference in the lives of people and families affected by COPD and the communities in which they live.
6537 Background: Two major barriers to patient clinical trial (CT) participation are lack of awareness of CTs and limited communication from physicians about available trials. Many call for a national communication campaign to increase public and physician awareness and interest in CTs. We present the results of a national survey assessing the impact of multiple message CT concept ads on individuals and primary care physicians (PCPs). Methods: National online survey in 2011 with PCPs (N = 171) and 3 categories of adults in the general public (healthy; ill with a serious chronic disease; or a caregiver; N = 541; oversampled for cancer). Individuals viewed 3 of 4 novel ads promoting CTs. Questions assessed attitudes and understanding of CTs, reactions to ads, and intentions to participate in (public) or recommend (PCPs) CTs before and after seeing the ads. Results: Prior to seeing ads, 65% of the public only had a general sense of CTs and 12% knew very little or nothing; only 36% said they were likely to consider a CT in the future. Top reasons to consider CTs were if earlier treatment did not work (64%) or their doctor recommended it (60%). Of PCPs, 59% said they were likely to suggest patients consider CTs. All ad concepts were rated positively ( = 3.7 to 4.3; 1 = very neg; 5 = very pos); though some were better received. Top strengths of ads were their appeal to the value of CTs and that “people like them” were in CTs; PCPs liked that viewers were encouraged to “talk with their doctors.” However, some responses differed across groups in the general public. After seeing the ads, the likelihood by the public to consider a CT nearly doubled (from 36% to 64%, p < .001) and 84% (increase by 25%, p < .001) of PCPs said they were likely to suggest CTs to patients. Conclusions: In general, ads were well received by all respondents and significantly increased the public’s consideration of CTs and PCPs’ likelihood of recommending CTs. The ads demonstrated the value of CTs, normalized CT participation, and proposed acceptable calls to action to talk with doctors and visit websites for more information. However, initial awareness of CTs is very low; any campaign would need to clearly and simply convey what a clinical trial is and care should be taken in selecting well-received ad concepts.
In the National Cancer Act of 1971, the Director of the National Cancer Institute (NCI) was given a mandate to "Collect, analyze, and disseminate all data useful in the prevention, diagnosis, and treatment of cancer, including the establishment of an International Cancer Research Data Bank (ICRDB) to collect, catalog, store, and disseminate insofar as feasible the results of cancer research undertaken in any country for the use of any person involved in cancer research in any country" (National Cancer Act of 1971, S 1828, 92nd Congress, 1st Sess (1971)). In subsequent legislation, the audience for NCI's information dissemination activities was expanded to include physicians and other healthcare professionals, patients and their families, and the general public, in addition to cancer researchers. The Institute's response to these legislative requirements was to create what is now known as the Physician Data Query (PDQ®) cancer information database. From its beginnings in 1977 as a database of NCI-sponsored cancer clinical trials, PDQ has grown to include extensive information about cancer treatment, screening, prevention, supportive and palliative care, genetics, drugs, and more. Herein, we describe the history, editorial processes, influence, and global reach of one component of the PDQ database, namely its evidence-based cancer information summaries for health professionals. These summaries are widely recognized as important cancer information and education resources, and they further serve as foundational documents for the development of other cancer information products by NCI and other organizations.
Cancer education is a constantly evolving field, as science continues to advance both our understanding of cancer and its effects on patients, families, and communities. Moving discoveries to practice expeditiously is paramount to impacting cancer outcomes. The continuing education of cancer care professionals throughout their practice life is vital to facilitating the adoption of therapeutic innovations. Meanwhile, more general educational programs serve to keep cancer patients, their families, and the public informed of the latest findings in cancer research. The National Cancer Institute conducted an assessment of the current knowledge base for cancer education which involved two literature reviews, one of the general literature of the evaluation of medical and health education efforts, and the other of the preceding 5 years of the Journal of Cancer Education (JCE). These reviews explored a wide range of educational models and methodologies. In general, those that were most effective used multiple methodologies, interactive techniques, and multiple exposures over time. Less than one third of the articles in the JCE reported on a cancer education or communication product, and of these, only 70% had been evaluated for effectiveness. Recommendations to improve the evaluation of cancer education and the educational focus of the JCE are provided.
This paper describes the development of CancerSPACE (Simulating Practice And Collaborative Education), a simulation-based, online e-learning tool for healthcare providers that aims to increase cancer screening rates for underserved and minority populations that bear a disproportional share of the cancer burden. It presents insight into the purpose of developing this type of educational tool as well as the reasoning and theories behind development. This paper also discusses different obstacles that were faced throughout development and how they were subsequently approached. The goal is to guide others in development of simulated e-learning tools which are focused on improving chronic and preventive care. Once the final version is completed, CancerSPACE will be evaluated to help expand the evidence-base available for guiding future efforts.
BACKGROUND:Adult participation in clinical trials is low, and many individuals are unaware of trials as an option. Raising awareness about clinical trials and addressing barriers through education is key to increasing enrollment in trials.METHODS:To reach communities, the National Cancer Institute (NCI) worked with partners to disseminate clinical trials education resources. Evaluation was conducted to determine the effectiveness of the dissemination approaches on program goals.RESULTS:Survey results indicated that partners disseminated, used, and were satisfied with the program resources. Focus group results corroborated these findings.CONCLUSIONS:NCI's program successfully used partnerships for broad dissemination of resources to improve clinical trials awareness.
Objectives: Shared decision making (SDM) is recommended as one method to assist men in making an informed decision about prostate cancer screening (PCS). SDM preferences for PCS have not been evaluated among African‐American (AA) men. Given AA men's increased risk and the uncertainty surrounding screening, it is critical to determine how to assist AA men in making an informed decision. We assessed the extent to which a sample of AA men wished to engage in SDM regarding PCS and the demographic and psychological characteristics associated with SDM preferences.
B25 Background: Team Up is a national pilot partnership among the American Cancer Society (ACS), U.S. Centers for Disease Control and Prevention (CDC), National Cancer Institute (NCI), and U.S. Department of Agriculture (USDA). Program agents from each national agency collaborated with local affiliates in six states to: 1) establish and strengthen partnership synergy at state and county levels; 2) identify, adopt and implement evidence-based interventions; and 3) improve breast and cervical screening among the most underserved women. We hypothesized that specific dimensions of partnership functioning are directly related to a partnership’s synergy, a proximal indicator of success. With this focus, emphasis was placed on collaboration to create a system change and identify variations in state practice, identify how variations may affect achievement of programmatic goals either positively or negatively. Methods: Partnership members completed the Lasker and Weiss Partnership Self-Assessment tool four times over three years (2004-2007). The tool measures partnership collaboration processes (synergy), partnership functioning (leadership, management) and community-related challenges (communication). Semi-structured qualitative interviews supplemented the on-line Lasker and Weiss surveys. Results: Preliminary results suggest that state teams understand the purpose of their partnership, but the strength of partnerships and degree of synergy varied between state and national teams and over time. Teams with higher synergy scores (mean 3.8 out of mean 5.0) were more likely to accomplish program goals than those with lower scores. Conclusions: Partnerships and collaborations can be advantageous, especially more inclusive partnerships with broad participation and open communication. Group cohesion and recognition of goals throughout the life of a project are essential to partnership success, and to improve cancer screening in diverse communities.
Background: Until there is a definitive demonstration that early diagnosis and treatment of prostate cancer reduces disease-related mortality, it is imperative to promote informed screening decisions by providing balanced information about the potential benefits and risks of prostate cancer screening. Within a community/academic collaboration, we conducted a randomized trial of a printed booklet and a videotape that were designed for African American (AA) men. The purpose of the trial was to determine the effect of the interventions on knowledge, decisional conflict, satisfaction with the screening decision, and self-reported screening.Methods: Participants were 238 AA men, ages 40 to 70 years, who were members of the Prince Hall Masons in Washington, DC. Men were randomly assigned to the (a) video-based information study arm, (b) print-based information study arm, or (c) wait list control study arm. Intervention materials were mailed to men at home. Assessments were conducted at baseline, 1 month, and 12 months postintervention. Multivariate analyses, including ANCOVA and logistic regression, were used to analyze group differences.Results: The booklet and video resulted in a significant improvement in knowledge and a reduction in decisional conflict about prostate cancer screening, relative to the wait list control. Satisfaction with the screening decision was not affected by the interventions. Self-reported screening rates increased between the baseline and the 1-year assessment, although screening was not differentially associated with either of the interventions. In exploratory analyses, prostate-specific antigen testing at 1 year was more likely among previously screened men and was associated with having low baseline decisional conflict.Conclusions: This study represents one of the first randomized intervention trials specifically designed to address AA men's informed decision making about prostate cancer screening. We have developed and evaluated culturally sensitive, balanced, and disseminable materials that improved knowledge and reduced decisional conflict about prostate cancer screening among AA men. Due to the high incidence and mortality rates among AA men, there is a need for targeted educational materials, particularly materials that are balanced in terms of the benefits and risks of screening.
Background: Over 80% of the excess deaths in minority and economically disadvantaged populations are from diseases with preventable or controllable contributing factors. However, mainstream health education targeting behavior change often fails to reach minority populations.Objective: To identify the health and cancer information sources used by a multi-ethnic population and to determine whether information sources differ by ethnic group, age, gender, and socioeconomic status.Methods: A multilingual, random-digit dial telephone survey of 2462 Hispanic (Colombian, Dominican, Ecuadorian, and Puerto Rican) and black (Caribbean, Haitian, and U.S.-born) persons, aged 18-80 years, from a population-based quota sample, New York City, 1992.Results: All ethnic and age groups cited a health professional as the most common source of health information (40% overall). The next most commonly cited sources overall were: television (21%), hospitals or doctor's offices (18%), books (17%), magazines (15%), brochures/pamphlets (11%), and radio (8%). Responses on sources of cancer information followed a similar pattern. Black subgroups were all significantly more likely than Hispanic subgroups to get their health information from a-doctor or other health professional (p = 0.001). Use of the radio as a source of health information was highest among Haitians (20.8%) and Colombians (12.5%), and lowest among U.S.-born blacks (4.2%) (p = 0.001), but there was no difference in the use of television. Among immigrants, as the proportion of life spent in mainland U.S. rose, increasing percentages cited magazines (p = 0.001) and decreasing percentages cited radio (p = 0.025) as a health information source. Less educated persons and more recent immigrants were most likely to report inability to get health information (p = 0.001).Conclusions: Given the variation in sources of health and cancer information, identification of those most commonly used is important to health educators' and public health practitioners' efforts to target hard-to-reach ethnic minorities.