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Background: Chronic red cell transfusion (CRCT) therapy is one of a few effective disease-modifying therapies for children with sickle cell anemia (SCA). CRCT is recommended for primary and secondary stroke prevention for at-risk children with SCA and is sometimes used for other disease-related complications. However, CRCT can be resource- and time-intensive for patients/families, providers, and organizations. This study was conducted to provide a comprehensive, multilevel examination of barriers and facilitators to transfusion therapy in children with SCA from health care provider and caregiver perspectives. Methods: A qualitative descriptive approach was used to conduct key informant interviews in a sample of 26 caregivers and 25 providers across the United States. Interviews were analyzed using directed content analysis with the Multilevel Ecological Model of Health as an initial coding framework and the constant comparison method. Results: Ten barrier themes and 10 facilitator themes emerged across all ecological levels. Themes most commonly occurred on the patient and organizational levels. Key barriers themes included Logistical Challenges, Obtaining and Maintaining Venous Access, Alloantibodies/Alloimmunization and Reactions, and Iron Overload and Adherence to Chelation Therapy. Key facilitator themes included Nursing and Non-nursing Staff Support, Positive Child/Family Experiences, Logistical Help and Social Resources, Blood Bank and Access to Blood, and Transfusion-Specific Resources. Discussion: The comprehensive understanding of multilevel barriers and facilitators to transfusion therapy, including the role of nursing, in children with SCA can inform strategies to improve CRCT for patients/families and providers and can also be applied by organizations seeking to implement transfusion services for SCA. [ABSTRACT FROM AUTHOR]

Introduction: Sickle cell disease (SCD) is an inherited hemoglobinopathy that predominantly affects African Americans in the United States. The disease is associated with complications leading to high healthcare utilization rates, including emergency department (ED) visits and hospitalizations. Optimal SCD care requires a multidisciplinary approach involving SCD specialists to ensure preventive care, minimize complications and prevent unnecessary ED visits and hospitalizations. However, most individuals with SCD receive sub-optimal care or are unaffiliated with care (have not seen an SCD specialist). We aimed to identify barriers to care from the perspective of individuals with SCD in a multi-state sample. Methods: We performed a multiple methods study consisting of surveys and interviews in three comprehensive SCD centers from March to June 2018. Interviews were transcribed and coded, exploring themes around barriers to care. Survey questions on the specific themes identified in the interviews were analyzed using summary statistics. Results: We administered surveys to 208 individuals and conducted 44 in-depth interviews. Barriers to care were identified and classified according to ecological level (i.e., individual, family/interpersonal, provider, and socio-environmental/organizational level). Individual-level barriers included lack of knowledge in self-management and disease severity. Family/interpersonal level barriers were inadequate caregiver support and competing life demands. Provider level barriers were limited provider knowledge, provider inexperience, poor provider-patient relationship, being treated differently, and the provider's lack of appreciation of the patient's SCD knowledge. Socio-environmental/organizational level barriers included limited transportation, lack of insurance, administrative barriers, poor care coordination, and reduced access to care due to limited clinic availability, services provided or clinic refusal to provide SCD care. Conclusion: Participants reported several multilevel barriers to SCD care. Strategies tailored towards reducing these barriers are warranted. Our findings may also inform interventions aiming to locate and link unaffiliated individuals to care. [ABSTRACT FROM AUTHOR]

The rates of colorectal cancer (CRC) screening in the U.S. remain below national targets, so many people at risk are not being screened. The objective of this qualitative research project was to assess patient and provider knowledge and preferences about CRC screening modalities and specifically the use of the fecal immunochemical test (FIT) as a first line screening choice. Nine focus groups were conducted with a medically underserved patient population and qualitative interviews were administered to their medical providers. Thematic analysis was used to synthesize key findings. Both providers and patients thought that the FIT would be a good option for CRC screening both as an individual choice and for an overall program approach. The test is less expensive and therefore more readily available for patients compared to colonoscopy. Overall, there was consensus that the FIT offers a reasonably priced, simple approach to CRC screening which has broad appeal to both providers and patients. Concerns identified by patients and providers included the possibility of false positives with the FIT which could be caused by test contamination or failing to perform the test properly. Patients also described feelings of disgust toward performing the FIT and difficulties in following the instructions. Study findings indicate provider and patient support for using the FIT for CRC screening at both the individual and system-wide levels of implementation. While barriers to the use of the FIT were listed, benefits of using the FIT were perceived as positive motivators to engage previously unscreened and uninsured or under-insured individuals in CRC screening. [ABSTRACT FROM AUTHOR]

Moral distress affects workplace environment, burnout, employee retention, and patient safety. Palliative care is frequently involved in complex care for patients that may cause moral distress among staff. The goal of this study was to measure change in moral distress among nurses after implementation of a policy that allows nurses to consult palliative care. Before the policy change, data were gathered via email using the Moral Distress Scale-Revised. The scale was redistributed 6 months after implementation of the consult policy. Pre and post Moral Distress Scale-Revised results were analyzed. Qualitative thematic analyses of the nurses" comments were conducted. A significantly lower percentage of nurses reported providing care for a hopelessly ill patient frequently or very frequently (34.6% vs 23.1%, P = .0397) after the policy change. However, a significantly higher percentage of nurses postpolicy reported frequently or very frequently providing less-than-optimal care because of pressures from administrators/insurers (14.4%vs 21.1%, P = .0378), caring for patients they did not feel qualified to care for (5.3%vs 14.8%, P = .0055), and working with providers who were not competent to care for the patient (13.9% vs 26.9%, P = .0059). Themes from nurses" comments were inadequate staffing, communication, ethical concerns, and lack of education. [ABSTRACT FROM AUTHOR]

Objectives: Our regional health information exchange (HIE), known as Carolina eHealth Alliance (CeHA)-HIE, serves all major hospital systems in our region and is accessible to emergency department (ED) clinicians in those systems. We wanted to understand reasons for low CeHA-HIE utilization and explore options for improving it.Methods: We implemented a 24-item user survey among ED clinician users of CeHA-HIE to investigate their perceptions of system usability and functionality, the quality of the information available through CeHA-HIE, the value of clinician time spent using CeHA-HIE, the ease of use of CeHA-HIE, and approaches for improving CeHA-HIE.Results: Of the 231 ED clinicians surveyed, 51 responded, and among those, 48 reported having used CeHA-HIE and completed the survey.Conclusions: Results show most ED clinicians believed that CeHA-HIE was easy to use and added value to their work, but they also desired better integration of information available from CeHA-HIE into their system's electronic medical record. [ABSTRACT FROM AUTHOR]

The National Institutes of Health convened a workshop to engage researchers and practitioners in dialogue on research issues viewed as either unique or of particular relevance to rural areas, key content areas needed to inform policy and practice in rural settings, and ways rural contexts may influence study design, implementation, assessment of outcomes, and dissemination. Our purpose was to develop a research agenda to address the disproportionate burden of cardiovascular disease (CVD) and related risk factors among populations living in rural areas. Complementary presentations used theoretical and methodological principles to describe research and practice examples from rural settings. Participants created a comprehensive CVD research agenda that identified themes and challenges, and provided 21 recommendations to guide research, practice, and programs in rural areas. INSETS: Workshop Presentations;Guiding Principles for Cardiovascular Disease Research in Rural..;Opportunities for Cardiovascular Disease Research in Rural.... [ABSTRACT FROM AUTHOR]

Objective. Although the rate of smoking among women giving birth in the United States has declined steadily from 19.5% in 1989 to 11.4% in 2002, it still far exceeds the Healthy People 2010 goal of 1%. The objective of this study was to estimate the costs of a recommended five-step smoking cessation counseling intervention for pregnant women. Methods. Costs were compared across three settings: a clinical trial, a quit line, and a rural managed care organization. Cost data were collected from August 2002 to September 2003. Intervention costs were compared with potential neonatal cost savings from averted adverse outcomes using data from the Centers for Disease Control and Prevention's Maternal and Child Health Smoking-Attributable Mortality, Morbidity, and Economics Costs software. Results. The costs of implementing the intervention ranged from $24 to $34 per pregnant smoker counseled across the three settings. Potential neonatal cost savings that could be accrued from women who quit smoking during pregnancy were estimated at $881 per maternal smoker. Assuming a 30% to 70% increase over baseline quit rates, interventions could net savings up to $8 million within the range of costs per pregnant smoker. Conclusions. Costs may vary depending on the intensity and nature of the intervention; however, this analysis found a surprisingly narrow range across three disparate settings. Cost estimates presented here are shown to be low compared with potential cost savings that could be accrued across the quit rates that could be achieved through use of the 5A's smoking cessation counseling intervention. [ABSTRACT FROM AUTHOR]

Approximately 13 percent of all pregnant women smoke during pregnancy despite known adverse health effects. Medicaid Programs pay for an estimated 27-53 per-cent of all births, yet little is known about smoking prevalence nor resulting expenses in this population. Findings indicate that pregnant women with deliveries paid by Medicaid are more than twice as likely to smoke as privately insured women; two-thirds of the estimated $366 million in 1996 neonatal expenses attributable to maternal smoking accrues to Medicaid Programs and these estimates vary widely across States. In light of these estimates, States should carefully consider targeted interventions and appropriate policies. [ABSTRACT FROM AUTHOR]

Where would one look for state-specific data on maternal and child health priority issues, such as unintended pregnancy, use and content of prenatal care, source and payment of prenatal care, Medicaid status, breast-feeding, cigarette smoking and alcohol use before and during pregnancy, physical abuse, and social stressors? For 16 states, the U.S. Centers for Disease Control and Prevention's Pregnancy Risk Assessment Monitoring System (PRAMS) is currently the answer. PRAMS are an ongoing, population-based surveillance system that collects data on a wide range of maternal behaviors and experiences that occur before, during, and after pregnancy. PRAMS were initiated in 1987 in response to several distressing statistics related to high rates of infant mortality and low birth weight, and the increasing recognition that maternal behaviors and experiences during pregnancy are related to these birth outcomes. PRAMS have many unique features, including collecting data that are ongoing, population based, and state-specific. Further, PRAMS employs a standardized data collection methodology and provides data on an array of topics for which there is no other state-specific source.

The authors look into the gray marketing employed by pharmaceutical companies for bipolar drugs used for off-label purposes. It is stated that this form of marketing aims to boost revenues from these products which cannot be sold directly. The U.S. Department of Justice presented the ways by which companies illegally market bipolar drugs, as part of the 2004 Warner-Lambert settlement. Examinations were also made on the off-label efficacy of Neurontin for bipolar disorders.

The article focuses on the study designed to assess and treat the tobacco use of pregnant women during preconceptional period. It aims to help parents-to-be to end permanently such smoking-related pregnancy and long-term health consequences. At this period, the use of tobacco increases the risk of cancer and other heart related diseases. Finally, every clinician who provides prenatal care must integrate a tobacco treatment system based on the guidelines of the U.S. Public Health Service.

Background: Sickle cell disease (SCD) is an autosomal recessive blood disorder affecting approximately 100,000 Americans and 3.1 million people globally. The scarcity of relevant knowledge and experience with rare diseases creates a unique need for cooperation and infrastructure to overcome challenges in translating basic research advances into clinical advances. Despite registry initiatives in SCD, the unavailability of descriptions of the selection process and copies of final data collection tools, coupled with incomplete representation of the SCD population hampers further research progress. This manuscript describes the SCDIC (Sickle Cell Disease Implementation Consortium) Registry development and makes the SCDIC Registry baseline and first follow-up data collection forms available for other SCD research efforts., Results: Study data on 2400 enrolled patients across eight sites was stored and managed using Research Electronic Data Capture (REDCap). Standardized data collection instruments, recruitment and enrollment were refined through consensus of consortium sites. Data points included measures taken from a variety of validated sources (PHENX, PROMIS and others). Surveys were directly administered by research staff and longitudinal follow-up was coordinated through the DCC. Appended registry forms track medical records, event-related patient invalidation, pregnancy, lab reporting, cardiopulmonary and renal functions., Conclusions: The SCDIC Registry strives to provide an accurate, updated characterization of the adult and adolescent SCD population as well as standardized, validated data collecting tools to guide evidence-based research and practice.

Colorectal cancer (CRC) is one of the most common cancers in the USA. In 2017, an estimated 135,420 people were diagnosed with CRC and 50,260 people died from CRC. Several screening modalities are recommended by the United States Preventive Services Task Force (USPSTF), including annual stool tests that are usually completed at home and under-used compared with colonoscopy despite stated patient preferences for an alternative to colonoscopy. The Community Preventive Services Task Force recommends use of small media interventions (SMIs) to increase CRC screening and calls for a greater understanding of its independent impact on screening participation. This study tested whether a SMI increased the likelihood of participant return of a USPSTF recommended Fecal Immunochemical Test (FIT). In total, 804 individuals participated in a two-group, prospective randomized controlled trial. Descriptive statistics with chi-square tests compared differences in participant characteristics and return rates. Multivariable log-binomial modeling estimated combined effects of patient characteristics with FIT return rates. No differences in return rates were observed overall or by participant characteristics other than the year of enrollment. A multivariable model controlling for all covariates, found gender, insurance type, and regular place for healthcare to be significantly associated with return rates. Receipt of the SMI did not independently increase overall return rates but it may have improved the ease of completing the FIT by some participants, particularly women, those with insurance, and those with a regular place for healthcare., (© Society of Behavioral Medicine 2018. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Purpose: Hormone receptor-positive (HR+) cancers account for most breast cancer diagnoses and deaths. Among survivors with HR + breast cancers, endocrine therapy (ET) reduces 5-year risk of recurrence by up to 40%. Observational studies in Medicare- and privately-insured survivors suggest underutilization of ET. We sought to characterize ET use in a low-income Medicaid-insured population in North Carolina., Methods: Medicaid claims data were matched to state cancer registry records for survivors aging 18-64 diagnosed with stage 0-II HR + breast cancer from 2003 to 2007, eligible for ET, and enrolled in Medicaid for at least 12 of 15 months post-diagnosis. We used multivariable logistic regression to model receipt of any ET medication during 15 months post-diagnosis controlling for age, race, tumor characteristics, receipt of other treatments, comorbidity, residence, reason for Medicaid eligibility, involvement in the Breast and Cervical Cancer Control Program (BCCCP), and diagnosis year., Results: Of 222 women meeting the inclusion criteria, only 50% filled a prescription for ET. Involvement in the BCCCP and earlier year of diagnoses were associated with significantly higher odds of initiating guideline-recommended ET (adjusted odds ratio [AOR] for the BCCCP 3.76, 95% confidence interval [CI] 1.67-8.48; AOR for 2004 relative to 2007 2.80, 95% CI 1.03-7.62; AOR for 2005 relative to 2007 2.11, 95% CI 0.92-4.85)., Conclusions: Results suggest substantial underutilization of ET in this population. Interventions are needed to improve timely receipt of ET and to better support survivors taking ET., Implications for Cancer Survivors: Low-income survivors should be counseled on the importance of ET and offered support services to promote initiation and long-term adherence.

The Institute of Medicine (IOM) released a groundbreaking report on lesbian, gay, bisexual, and transgender (LGBT) health in 2011, finding limited evidence of tobacco disparities. We examined IOM search terms and used 2 systematic reviews to identify 71 articles on LGBT tobacco use. The IOM omitted standard tobacco-related search terms. The report also omitted references to studies on LGBT tobacco use (n = 56), some with rigorous designs. The IOM report may underestimate LGBT tobacco use compared with general population use.

Introduction: Adverse maternal and infant health outcomes due to maternal smoking are well known. Previous estimates of health care costs for infants at delivery attributable to maternal smoking were $366 million, $704 per smoker, in 1996 dollars. Changes in antenatal and neonatal care, medical care inflation, and declines in the prevalence of maternal smoking call for an updated analysis., Methods: We used Pregnancy Risk Assessment Monitoring System for 2001/2002 to estimate the association of maternal smoking to Neonatal Intensive Care Unit (NICU) admission and, in turn, the length of stay for infants admitted/not admitted. Models are then used with 2003 natality files to derive predicted expenses as is and "as if" mothers did not smoke. The difference in these predicted expenses is smoking attributable expenses (SAEs). The updated analysis incorporated Hispanic ethnicity as an additional variable, data from 27 as opposed to 13 states, and updated (2004) NICU costs per night., Results: In contrast to earlier work, we find no significant association of maternal smoking and NICU admission but rather, a positive effect on the length of stay of exposed infants once admitted to the NICU. SAEs were estimated at $122 million (CI = -$29m to $285m) nationally and $279 (CI = -$76 to $653) per maternal smoker in 2004 dollars., Conclusions: Declines in maternal smoking prevalence between the mid-1990s and 2003 combined with a weaker relationship of maternal smoking to NICU admission offset medical care inflation such that infants' SAEs declined. Yet, these are significant in magnitude, incurred immediately and highly preventable.

Systematic reviews have become a common method of synthesizing literature to examine the comparative effectiveness of medical interventions. Groups such as the Cochrane Collaboration and the U.S. Agency for Healthcare Research and Quality (AHRQ) conduct dozens of such reviews each year. However, these documents are often hundreds of pages long and the intended audiences, including medical providers and payers, may have difficulty interpreting the often technical terminology used in these reports. In this article, we describe the derivation of "key concepts" on the efficacy of antiepileptic drugs (AEDs) in the treatment of bipolar disorder from a pre- viously published systematic review of the use of AEDs (AED Review) for multiple indications, including mood disorders and chronic pain. With the aid of a multidisciplinary science panel, we derived the key concepts from the source report and subsequent updates of that report. Because we found that the key concepts were still quite technical, we subsequently derived four less technical "key messages" and revised these through multiple additional iterations. The concepts and messages were then tested with key informants and focus groups. At all stages of the process, we found that it was critical to maintain fidelity to the initial systematic review. The structured approach used in the derivation process described here proved to be very helpful in developing key messages and concepts.

Evidence from drug class reviews is often not accessible to practicing clinicians nor is it presented in a way that allows clinicians to use the information to guide treatment and prescribing decisions. Nevertheless, information from such reviews can be very helpful to clinicians as they evaluate the "evidence" provided to them through marketing strategies implemented, primarily, by the pharmaceutical industry and designed to influence their prescribing behavior. Unfortunately, these marketing strategies can be used to promote the off-label use of drugs that may not be efficacious. One example is the pharmaceutical marketing to promote off-label use of gabapentin (Neurontin) for the treatment of bipolar disorder, the legality of which was later addressed in a major lawsuit by the National Association of Attorneys General. We describe an effort to use counter-marketing strategies to compete with those implemented by the pharmaceutical industry and to help clinicians, principally psychiatrists, make use of available evidence to inform their prescription of antiepileptic drugs (AEDs) in the treatment of bipolar disorder. A growing body of literature describes industry marketing practices designed to influence prescriber behavior. This literature suggests that use of competing approaches involving the same underlying strategies to deliver highly credible information from trusted sources can inform prescriber knowledge and prescribing practice. We describe our use of existing evidence to develop accurate and convincing messages and materials to be disseminated nationally to counter industry misinformation and promote evidence-based prescription of AEDs.

Background: The prevalence of smoking, and cessation and relapse rates for pregnant women have health and financial implications. Our objectives were to describe smoking among pregnant smokers receiving Medicaid including characteristics associated with reporting discussion of smoking with providers and the association between those discussions with quitting and maintenance., Methods: Analysis of Pregnancy Risk Assessment Monitoring System (PRAMS) data from 15 states for 20,287 women with Medicaid for prenatal care during 1998-2000., Results: Thirty-four percent of women smoked before pregnancy (N = 7,686). Most smokers (93%) and nonsmokers (88%) reported discussions about smoking during prenatal care. Women were less likely to have discussed smoking if they were lighter smokers (OR = 1.47; CI = 1.03, 2.12), or reported a previous low-birthweight infant (OR = 1.72; CI = 1.03-2.86). Women reporting discussions (compared to those not) were less likely to quit (ARR = 0.70: CI = 0.59-0.91). Quitters reporting discussions (compared to those not) were no more likely to maintain cessation (ARR = 0.89; CI = 0.7, 1.21)., Conclusions: Smoking cessation interventions can be improved for pregnant women receiving Medicaid, especially if focused to address individual needs of light smokers, those with previous low-birthweight infants, or those who find it most difficult to quit.

North Carolina faces major challenges in dealing with smoking and its consequences during pregnancy and infancy. Evidence-based strategies exist to help pregnant and parenting smokers to quit, to discourage young people from becoming smokers and to reduce exposure of infants to SHS. North Carolina is making progress in implementing these strategies, but more infant lives could be saved each year if the state adopted a more comprehensive approach to addressing tobacco use by improving cessation services for pregnant and parenting smokers, reimbursing clinicians for providing cessation services, increasing state excise taxes on tobacco products, establishing statewide help or quitline services and adopting tobacco-free school policies. These proven strategies can make a difference.