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Abstract Background Adults with sickle cell disease (SCD) suffer early mortality and high morbidity. Many are not affiliated with SCD centers, defined as no ambulatory visit with a SCD specialist in 2 years. Negative social determinants of health (SDOH) can impair access to care. Hypothesis: Negative SDOH are more likely to be experienced by unaffiliated adults than adults who regularly receive expert SCD care. Methods Cross-sectional analysis of the SCD Implementation Consortium (SCDIC) Registry, a convenience sample at 8 academic SCD centers in 2017–2019. A Distressed Communities Index (DCI) score was assigned to each registry member’s zip code. Insurance status and other barriers to care were self-reported. Most patients were enrolled in the clinic or hospital setting. Results The SCDIC Registry enrolled 288 Unaffiliated and 2110 Affiliated SCD patients, ages 15-45y. The highest DCI quintile accounted for 39% of both Unaffiliated and Affiliated patients. Lack of health insurance was reported by 19% of Unaffiliated versus 7% of Affiliated patients. The most frequently selected barriers to care for both groups were “previous bad experience with the healthcare system” (40%) and “Worry about Cost” (17%). SCD co-morbidities had no straightforward trend of association with Unaffiliated status. The 8 sites’ results varied. Conclusion The DCI economic measure of SDOH was not associated with Unaffiliated status of patients recruited in the health care delivery setting. SCDIC Registrants reside in more distressed communities than other Americans. Other SDOH themes of affordability and negative experiences might contribute to Unaffiliated status. Recruiting Unaffiliated SCD patients to care might benefit from systems adopting value-based patient-centered solutions.

Abstract Background Children with sickle cell anemia are at risk for stroke. Ischemic stroke risk can be identified among children ages 2–16 years with sickle cell anemia using transcranial Doppler ultrasound. Despite strong recommendations for transcranial Doppler screening in guidelines released by the National Heart, Lung, and Blood Institute, implementation of transcranial Doppler screening in sickle cell anemia remains suboptimal. The purpose of this study was to identify barriers and facilitators to transcranial Doppler screening in a large national consortium to inform subsequent implementation interventions. Methods A qualitative descriptive approach was used to conduct 52 semi-structured interviews with a sample of patients with sickle cell anemia, their parents or primary caregivers, and healthcare providers dispersed across the United States. Interviews took place from September 2018 through March 2019. Directed content analysis was conducted with an adapted version of the Multilevel Ecological Model of Health as an initial coding framework, completed July 2019. Frequency analysis was conducted to determine predominant barrier and facilitator themes. Results Fourteen barrier themes and 12 facilitator themes emerged representing all levels of the ecological framework. Two barrier themes (Logistical Difficulties and Competing Life Demands and Gaps in Scheduling and Coordination), and 5 facilitator themes (Coordination, Scheduling and Reminders; Education and Information; Provider and Staff Investment and Assistance; Positive Patient Experience; and Convenient Location) were predominant. Conclusions Barriers and facilitators to transcranial Doppler screening in children with sickle cell anemia are complex and occur across multiple ecological levels. One barrier theme and 3 facilitator themes were found to be optimal to address in subsequent implementation interventions.

Abstract 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.

Abstract Introduction: The US National Institutes of Health (NIH) established the Clinical and Translational Science Award (CTSA) program in response to the challenges of translating biomedical and behavioral interventions from discovery to real-world use. To address the challenge of translating evidence-based interventions (EBIs) into practice, the field of implementation science has emerged as a distinct discipline. With the distinction between EBI effectiveness research and implementation research comes differences in study design and methodology, shifting focus from clinical outcomes to the systems that support adoption and delivery of EBIs with fidelity. Methods: Implementation research designs share many of the foundational elements and assumptions of efficacy/effectiveness research. Designs and methods that are currently applied in implementation research include experimental, quasi-experimental, observational, hybrid effectiveness–implementation, simulation modeling, and configurational comparative methods. Results: Examples of specific research designs and methods illustrate their use in implementation science. We propose that the CTSA program takes advantage of the momentum of the field's capacity building in three ways: 1) integrate state-of-the-science implementation methods and designs into its existing body of research; 2) position itself at the forefront of advancing the science of implementation science by collaborating with other NIH institutes that share the goal of advancing implementation science; and 3) provide adequate training in implementation science. Conclusions: As implementation methodologies mature, both implementation science and the CTSA program would greatly benefit from cross-fertilizing expertise and shared infrastructures that aim to advance healthcare in the USA and around the world.

Abstract Introduction: Translating research findings into practice requires understanding how to meet communication and dissemination needs and preferences of intended audiences including past research participants (PSPs) who want, but seldom receive, information on research findings during or after participating in research studies. Most researchers want to let others, including PSP, know about their findings but lack knowledge about how to effectively communicate findings to a lay audience. Methods: We designed a two-phase, mixed methods pilot study to understand experiences, expectations, concerns, preferences, and capacities of researchers and PSP in two age groups (adolescents/young adults (AYA) or older adults) and to test communication prototypes for sharing, receiving, and using information on research study findings. Principal Results: PSP and researchers agreed that sharing study findings should happen and that doing so could improve participant recruitment and enrollment, use of research findings to improve health and health-care delivery, and build community support for research. Some differences and similarities in communication preferences and message format were identified between PSP groups, reinforcing the best practice of customizing communication channel and messaging. Researchers wanted specific training and/or time and resources to help them prepare messages in formats to meet PSP needs and preferences but were unaware of resources to help them do so. Conclusions: Our findings offer insight into how to engage both PSP and researchers in the design and use of strategies to share research findings and highlight the need to develop services and support for researchers as they aim to bridge this translational barrier.

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.

Despite efforts to promote healthy weight, obesity is at epidemic levels among adults in the US. We examined the prevalence of weight loss attempts among a racially diverse sample of overweight and obese primary care patients (n=274) based on sociodemographic, clinical and psychological factors, and shared decision-making (SDM) about weight loss/management. This observational study was conducted from December 2015 through January 2017. Data were obtained by self-report via survey. Overall, 64% of participants were attempting to lose weight at the time of survey. No significant differences in current weight loss attempts were found based on racial background, sociodemographic characteristics, or clinical factors. Participants who believed they were obese/overweight (OR=6.70, 95% CI=2.86, 15.72, p

Objective: Primary care providers play an important role in obesity prevention and reduction by advising patients about weight loss strategies. This study examined receipt of provider advice to lose weight among primary care patients who were overweight and obese. Methods: Observational study conducted among primary care patients (n = 282) who completed a survey that measured receipt of provider advice about weight loss/management, chronic health conditions, perceived weight status, and perceptions about shared decision making about weight loss/management. Results: Fifty-nine percent of participants had been advised by their physician to lose weight. Participants who were obese were more likely than those who were overweight to report provider advice (odds ratio [OR] = 1.31, 95% CI = 1.25-4.34, P = .001). Similarly, participants who believed they were obese/overweight had a greater likelihood of reporting provider advice compared with those who did not believe they were obese/overweight (OR = 1.40, 95% CI = 2.43-6.37, P = .0001). Shared decision making about weight loss/management was associated with an increased likelihood of reporting provider advice (OR = 3.30, 95% CI = 2.62-4.12, P = .0001). Conclusions: Patient beliefs about their weight status and perceptions about shared decision-making are important to receiving provider advice about weight loss/management among primary care patients. Practice Implications: Continued efforts are needed to enhance provider advice about weight loss/management among obese/overweight patients.

Introduction: Use clinician perceptions to estimate the impact of a health information exchange (HIE) on emergency department (ED) care at four major hospital systems (HS) within a region. Use survey data provided by ED clinicians to estimate reduction in Medicare-allowable reimbursements (MARs) resulting from use of an HIE. Methods: We conducted the study during a one-year period beginning in February 2012. Study sites included eleven EDs operated by four major HS in the region of a mid-sized Southeastern city, including one academic ED, five community hospital EDs, four free-standing EDs and 1 ED/Chest Pain Center (CPC) all of which participated in an HIE. The study design was observational, prospective using a voluntary, anonymous, online survey. Eligible participants included attending emergency physicians, residents, and mid-level providers (PA & NP). Survey items asked clinicians whether information obtained from the HIE changed resource use while caring for patients at the study sites and used branching logic to ascertain specific types of services avoided including laboratory/microbiology, radiology, consultations, and hospital admissions. Additional items asked how use of the HIE affected quality of care and length of stay. The survey was automated using a survey construction tool (REDCap Survey Software © 2010 Vanderbilt University). We calculated avoided MARs by multiplying the numbers and types of services reported to have been avoided. Average cost of an admission from the ED was based on direct cost trends for ED admissions within the region. Results: During the 12-month study period we had 325,740 patient encounters and 7,525 logons to the HIE (utilization rate of 2.3%) by 231 ED clinicians practicing at the study sites. We collected 621 surveys representing 8.25% of logons of which 532 (85.7% of surveys) reported on patients who had information available in the HIE. Within this group the following services and MARs were reported to have been avoided [type of service: number of services; MARs]: Laboratory/Microbiology:187; $2,073, Radiology: 298; $475,840, Consultations: 61; $6,461, Hospital Admissions: 56; $551,282. Grand total of MARs avoided: $1,035,654; average $1,947 per patient who had information available in the HIE (Range: $1,491 - $2,395 between HS). Changes in management other than avoidance of a service were reported by 32.2% of participants. Participants stated that quality of care was improved for 89% of patients with information in the HIE. Eighty-two percent of participants reported that valuable time was saved with a mean time saved of 105 minutes. Conclusion: Observational data provided by ED clinicians practicing at eleven EDs in a mid-sized Southeastern city showed an average reduction in MARs of $1,947 per patient who had information available in an HIE. The majority of reduced MARs were due to avoided radiology studies and hospital admissions. Over 80% of participants reported that quality of care was improved and valuable time was saved. [West J Emerg Med. 2014;15(7):–0.]

IntroductionSickle 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.MethodsWe 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.ResultsWe 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.ConclusionParticipants 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.