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In 2021, the Medical University of South Carolina (MUSC) launched In Our DNA SC. This large-scale initiative will screen 100,000 individuals in South Carolina for three preventable hereditary conditions that impact approximately two million people in the USA but often go undetected. In anticipation of inevitable changes to the delivery of this complex initiative, we developed an approach to track and assess the impact of evaluate adaptations made during the pilot phase of program implementation. We used a modified version of the Framework for Reporting Adaptations and Modification-Enhanced (FRAME) and Adaptations to code adaptations made during the 3-month pilot phase of In Our DNA SC. Adaptations were documented in real-time using a REDCap database. We used segmented linear regression models to independently test three hypotheses about the impact of adaptations on program reach (rate of enrollment in the program, rate of messages viewed) and implementation (rate of samples collected) 7 days pre- and post-adaptation. Effectiveness was assessed using qualitative observations. Ten adaptations occurred during the pilot phase of program implementation. Most adaptations (60%) were designed to increase the number and type of patient contacted (reach). Adaptations were primarily made based on knowledge and experience (40%) or from quality improvement data (30%). Of the three adaptations designed to increase reach, shortening the recruitment message potential patients received significantly increased the average rate of invitations viewed by 7.3% (p = 0.0106). There was no effect of adaptations on implementation (number of DNA samples collected). Qualitative findings support improvement in effectiveness of the intervention after shortening the consent form and short-term positive impact on uptake of the intervention as measured by team member’s participation. Our approach to tracking adaptations of In Our DNA SC allowed our team to quantify the utility of modifications, make decisions about pursuing the adaptation, and understand consequences of the change. Streamlining tools for tracking and responding to adaptations can help monitor the incremental impact of interventions to support continued learning and problem solving for complex interventions being delivered in health systems based on real-time data.

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.

Telehealth is a rapidly expanding care modality in the United States. Pediatric surgical patients often require complex care which can incur significant expenses, some of which may be alleviated by telehealth. We performed a systematic review comparing telehealth and in-person visits, and telehealth's impacts on the cost of healthcare across pediatric surgical specialties.A systematic review was performed using the following databases: PubMed (MEDLINE), Scopus (Elsevier), and CINAHL (EBSCOHost), searched from inception to July 10th, 2022. Studies were included per the following criteria: (1) investigated a telehealth intervention for pediatric surgical care and (2) provided some metric of telehealth cost compared to an in-person visit. Non-English or studies conducted outside of the U.S. were excluded.Fourteen manuscripts met inclusion criteria and presented data on 7992 visits, including patients with a weighted average age of 7.5 ± 3.5 years. Most (11/14) studies used telehealth in a synchronous, or "real-time" context. Of the studies which calculated dollar cost savings for telehealth visits compared to in-person appointments we found a substantial range of savings per visit, from $48.50 to $344.64. Cost savings were frequently realized in terms of reduced travel expenditures, lower opportunity costs (e.g. lost wages), and decreased hospital labor requirements.This review suggests that telehealth provides cost incentives to pediatric surgical care in many scenarios, including post-operative visits and some routine clinic visits. Future work should focus on standardizing the metrics by which cost impacts are analyzed and detailing which visits are most appropriately facilitated by telehealth.V.

Stroke prevention guidelines for sickle cell anemia (SCA) recommend transcranial Doppler (TCD) screening to identify children at stroke risk; however, TCD screening implementation remains poor. This report describes results from Part 1 of the 28-site DISPLACE (Dissemination and Implementation of Stroke Prevention Looking at the Care Environment) study, a baseline assessment of TCD implementation rates. This report describes TCD implementation by consortium site characteristics; characteristics of TCDs completed; and TCD results based on age. The cohort included 5247 children with SCA, of whom 5116 were eligible for TCD implementation assessment for at least one study year. The majority of children were African American or Black, non-Hispanic and received Medicaid. Mean age at first recorded TCD was 5.9 years and 10.5 years at study end. Observed TCD screening rates were unsatisfactory across geographic regions (mean 49.9%; range 30.9–74.7%) independent of size, institution type, or previous stroke prevention trial participation. The abnormal TCD rate was 2.9%, with a median age of 6.3 years for first abnormal TCD result. Findings highlight real-world TCD screening practices and results from the largest SCA cohort to date. Data informed the Part 3 implementation study for improving stroke screening and findings may inform clinical practice improvements.

OBJECTIVE. To assess the impact of rural-urban residence on children with obstructive sleep-disordered breathing (SDB) who were candidates for tonsillectomy with or without adenoidectomy (TA). STUDY DESIGN. Retrospective cohort study. SETTING. Tertiary children’s hospital. METHODS. A cohort of otherwise healthy children aged 2 to 18 years with a diagnosis of obstructive SDB between April 2016 and December 2018 who were recommended TA were included. Rural-urban designation was defined by ZIP code approximation of rural-urban commuting area codes. The main outcome was association of rurality with time to TA and loss to follow-up using Cox and logistic regression analyses. RESULTS. In total, 213 patients were included (mean age 6 ± 2.9 years, 117 [55%] male, 69 [32%] rural dwelling). Rural-dwelling children were more often insured by Medicaid than private insurance (P < .001) and had a median driving distance of 74.8 vs 16.8 miles (P < .001) compared to urban-dwelling patients. The majority (94.9%) eventually underwent recommended TA once evaluated by an otolaryngologist. Multivariable logistic regression analysis did not reveal any significant predictors for loss to follow-up in receiving TA. Cox regression analysis that adjusted for age, sex, insurance, and race showed that rural-dwelling patients had a 30% reduction in receipt of TA over time as compared to urban-dwelling patients (hazard ratio, 0.7; 95% CI, 0.50-0.99). CONCLUSION. Rural-dwelling patients experienced longer wait times and driving distance to TA. This study suggests that rurality should be considered a potential barrier to surgical intervention and highlights the need to further investigate geographic access as an important determinant of care in pediatric SDB.

Sickle cell disease (SCD) is a genetic disorder predominantly affecting people of African descent and is associated with significant morbidity and mortality. To improve SCD outcomes, the National Heart Lung and Blood Institute funded eight centers to participate in the SCD Implementation Consortium. Sites were required to each recruit 300 individuals with SCD, over 20 months. We aim to describe recruitment strategies and challenges encountered. Participants aged 15–45 years with confirmed diagnosis of SCD were eligible. Descriptive statistics were used to analyze the effectiveness of each recruitment strategy. A total of 2432 participants were recruited. Majority (95.3%) were African American. Successful strategies were recruitment from clinics (68.1%) and affiliated sites (15.6%). Recruitment at community events, emergency departments and pain centers had the lowest yield. Challenges included saturation of strategies and time constraints. Effective recruitment of participants in multi-site studies requires multiple strategies to achieve adequate sample sizes.

Individuals with sickle cell disease (SCD) experience neurocognitive decline, low medication adherence, increased unemployment, and difficulty with instrumental activities of daily living (IADL). The relationship between self-perceived cognitive difficulties and IADLs, including employment, school enrollment, independence, engagement in leisure activities, and medication adherence is unknown. We hypothesized that self-reported difficulties across neurocognitive areas would predict lower IADL skills. Adolescent and adult participants of the multi-site Sickle Cell Disease Implementation Consortium (SCDIC) (n=2436) completed patient-reported outcome (PRO) measures of attention, executive functioning, processing speed, learning, and comprehension. Cognitive symptoms were analyzed as predictors in multivariable modeling. Outcome variables included 1) an IADL composite that consisted of employment, participation in school, reliance on others, and leisure pursuits, and 2) hydroxyurea adherence. Participants reported cognitive difficulty across areas of attention (55%), executive functioning (51%), processing speed (57%), and reading comprehension (65%). Executive dysfunction (p

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.

Background Individuals living with sickle cell disease often require aggressive treatment of pain associated with vaso-occlusive episodes in the emergency department. Frequently, pain relief is poor. The 2014 National Heart, Lung, and Blood Institute evidence-based guidelines recommended an individualized treatment and monitoring protocol to improve pain management of vaso-occlusive episodes. Objective This study will implement an electronic health record–embedded individualized pain plan with provider and patient access in the emergency departments of 8 US academic centers to improve pain treatment for adult patients with sickle cell disease. This study will assess the overall effects of electronic health record–embedded individualized pain plans on improving patient and provider outcomes associated with pain treatment in the emergency department setting and explore barriers and facilitators to the implementation process. Methods A preimplementation and postimplementation study is being conducted by all 8 sites that are members of the National Heart, Lung, and Blood Institute–funded Sickle Cell Disease Implementation Consortium. Adults with sickle cell disease aged 18 to 45 years who had a visit to a participating emergency department for vaso-occlusive episodes within 90 days prior to enrollment will be eligible for inclusion. Patients will be enrolled in the clinic or remotely. The target analytical sample size of this study is 160 patient participants (20 per site) who have had an emergency department visit for vaso-occlusive episode treatment at participating emergency departments during the study period. Each site is expected to enroll approximately 40 participants to reach the analytical sample size. The electronic health record–embedded individualized pain plans will be written by the patient’s sickle cell disease provider, and sites will work with the local informatics team to identify the best method to build the electronic health record–embedded individualized pain plan with patient and provider access. Each site will adopt required patient and provider implementation strategies and can choose to adopt optional strategies to improve the uptake and sustainability of the intervention. The study is informed by the Technology Acceptance Model 2 and the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Provider and patient baseline survey, follow-up survey within 96 hours of an emergency department vaso-occlusive episode visit, and selected qualitative interviews within 2 weeks of an emergency department visit will be performed to assess the primary outcome, patient-perceived quality of emergency department pain treatment, and additional implementation and intervention outcomes. Electronic health record data will be used to analyze individualized pain plan adherence and additional secondary outcomes, such as hospital admission and readmission rates. Results The study is currently enrolling study participants. The active implementation period is 18 months. Conclusions This study proposes a structured, framework-informed approach to implement electronic health record–embedded individualized pain plans with both patient and provider access in routine emergency department practice. The results of the study will inform the implementation of electronic health record–embedded individualized pain plans at a larger scale outside of Sickle Cell Disease Implementation Consortium centers. Trial Registration ClinicalTrials.gov NCT04584528; https://clinicaltrials.gov/ct2/show/NCT04584528. International Registered Report Identifier (IRRID) DERR1-10.2196/24818

BACKGROUND Individuals living with sickle cell disease often require aggressive treatment of pain associated with vaso-occlusive episodes in the emergency department. Frequently, pain relief is poor. The 2014 National Heart, Lung, and Blood Institute evidence-based guidelines recommended an individualized treatment and monitoring protocol to improve pain management of vaso-occlusive episodes. OBJECTIVE This study will implement an electronic health record–embedded individualized pain plan with provider and patient access in the emergency departments of 8 US academic centers to improve pain treatment for adult patients with sickle cell disease. This study will assess the overall effects of electronic health record–embedded individualized pain plans on improving patient and provider outcomes associated with pain treatment in the emergency department setting and explore barriers and facilitators to the implementation process. METHODS A preimplementation and postimplementation study is being conducted by all 8 sites that are members of the National Heart, Lung, and Blood Institute–funded Sickle Cell Disease Implementation Consortium. Adults with sickle cell disease aged 18 to 45 years who had a visit to a participating emergency department for vaso-occlusive episodes within 90 days prior to enrollment will be eligible for inclusion. Patients will be enrolled in the clinic or remotely. The target analytical sample size of this study is 160 patient participants (20 per site) who have had an emergency department visit for vaso-occlusive episode treatment at participating emergency departments during the study period. Each site is expected to enroll approximately 40 participants to reach the analytical sample size. The electronic health record–embedded individualized pain plans will be written by the patient’s sickle cell disease provider, and sites will work with the local informatics team to identify the best method to build the electronic health record–embedded individualized pain plan with patient and provider access. Each site will adopt required patient and provider implementation strategies and can choose to adopt optional strategies to improve the uptake and sustainability of the intervention. The study is informed by the Technology Acceptance Model 2 and the Reach, Effectiveness, Adoption, Implementation, and Maintenance framework. Provider and patient baseline survey, follow-up survey within 96 hours of an emergency department vaso-occlusive episode visit, and selected qualitative interviews within 2 weeks of an emergency department visit will be performed to assess the primary outcome, patient-perceived quality of emergency department pain treatment, and additional implementation and intervention outcomes. Electronic health record data will be used to analyze individualized pain plan adherence and additional secondary outcomes, such as hospital admission and readmission rates. RESULTS The study is currently enrolling study participants. The active implementation period is 18 months. CONCLUSIONS This study proposes a structured, framework-informed approach to implement electronic health record–embedded individualized pain plans with both patient and provider access in routine emergency department practice. The results of the study will inform the implementation of electronic health record–embedded individualized pain plans at a larger scale outside of Sickle Cell Disease Implementation Consortium centers. CLINICALTRIAL ClinicalTrials.gov NCT04584528; https://clinicaltrials.gov/ct2/show/NCT04584528. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/24818

Background Children with sickle cell anemia (SCA) are at risk for neurologic complications (stroke and silent cerebral infarct). The 2014 National Heart, Lung, and Blood Institute (NHLBI) guidelines for sickle cell disease include recommendations for initiation and maintenance of chronic red cell transfusion (CRCT) therapy for children with SCA at risk for or with ischemic stroke. The guidelines do not include well-delineated recommendations for cerebral imaging for stroke screening. The purpose of this study was to evaluate current stroke risk screening, prevention, and intervention practices amongst the Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) study sites. Procedure A survey was administered to DISPLACE site principal investigators to identify current stroke prevention practices relative to the Stroke Prevention Trial in Sickle Cell Anemia (STOP) study protocols and the 2014 NHLBI guidelines. Data were analyzed using descriptive statistics and line-by-line analysis of comments. Results Sites consistently applied NHLBI recommendations to initiate CRCT for ischemic stroke and abnormal transcranial Doppler ultrasound (TCD) results. Similarly, nearly all sites reported obtaining an magnetic resonance imaging (MRI)/magnetic resonance angiography (MRA) following an abnormal TCD result. There was wide variation for other indications for MRI/MRA, frequency of MRI/MRA, and other neurological indications for initiating CRCT. Conclusions Guideline-based practices for preventing ischemic stroke through TCD and CRCT initiation were evident in nearly all sites. Wide variation in practices pertaining to MRI/MRA exists, potentially influenced by more recent stroke prevention trials. New guidelines from the American Society of Hematology were published in April 2020, which may reduce practice variation.

OBJECTIVE To determine the impact of race and ethnicity on 30-day complications following pediatric endoscopic sinus surgery (ESS). STUDY DESIGN Cross-sectional cohort study. SUBJECTS AND METHODS Patients ≤ 18 years of age undergoing ESS from 2015 to 2017 were identified in the Pediatric National Surgical Improvement Program-Pediatric database. Patient demographics, comorbidities, surgical indication, and postoperative complications were extracted. Patient race/ethnicity included non-Hispanic black, non-Hispanic white, Hispanic, and other. Multivariable logistic regression was performed to determine if race/ethnicity was a predictor of postoperative complications after ESS. RESULTS A total of 4,337 patients were included in the study. The median age was 10.9 (interquartile range: 14.5-6.7) years. The cohort was comprised of 68.3% non-Hispanic white, 13.9% non-Hispanic black, 9.7% Hispanic, and 2.1% other. The 30-day complication rate was 3.2%, and the mortality rate was 0.3%. The rate of reoperation was 3.8%, and readmission was 4.1%. Black and Hispanic patients had higher rates of urgent operations (P = .003 and P

Background Hydroxyurea prevents disease complications among patients with sickle cell disease (SCD). Although its efficacy has been endorsed by the National Health Lung and Blood Institute evidence-based guidelines, its adoption is low, both by patients with SCD and providers. Mobile health (mHealth) apps provide benefits in improving medication adherence and self-efficacy among patients with chronic diseases and have facilitated prescription among medical providers. However, mHealth has not been systematically tested as a tool to increase hydroxyurea adherence nor has the combination of mHealth been assessed at both patient and provider levels to increase hydroxyurea utilization. Objective This study aims to increase hydroxyurea utilization through a combined two-level mHealth intervention for both patients with SCD and their providers with the goals of increasing adherence to hydroxyurea among patients and improve hydroxyurea prescribing behavior among providers. Methods We will test the efficacy of 2 mHealth interventions to increase both patient and provider utilization and knowledge of hydroxyurea in 8 clinical sites of the NHLBI-funded Sickle Cell Disease Implementation Consortium (SCDIC). The patient mHealth intervention, InCharge Health, includes multiple components that address memory, motivation, and knowledge barriers to hydroxyurea use. The provider mHealth intervention, Hydroxyurea Toolbox (HU Toolbox), addresses the clinical knowledge barriers in prescribing and monitoring hydroxyurea. The primary hypothesis is that among adolescents and adults with SCD, adherence to hydroxyurea, as measured by the proportion of days covered (the ratio of the number of days the patient is covered by the medication to the number of days in the treatment period), will increase by at least 20% after 24 weeks of receiving the InCharge Health app, compared with their adherence at baseline. As secondary objectives, we will (1) examine the change in health-related quality of life, acute disease complications, perceived health literacy, and perceived self-efficacy in taking hydroxyurea among patients who use InCharge Health and (2) examine potential increases in the awareness of hydroxyurea benefits and risks, appropriate prescribing, and perceived self-efficacy to correctly administer hydroxyurea therapy among SCD providers between baseline and 9 months of using the HU Toolbox app. We will measure the reach, adoption, implementation, and maintenance of both the InCharge Health and the HU Toolbox apps using the reach, effectiveness, adoption, implementation, and maintenance framework and qualitatively evaluate the implementation of both mHealth interventions. Results The study is currently enrolling study participants. Recruitment is anticipated to be completed by mid-2021. Conclusions If this two-level intervention, that is, the combined use of InCharge Health and HU Toolbox apps, demonstrates efficacy in increasing adherence to hydroxyurea and prescribing behavior in patients with SCD and their providers, respectively, both apps will be offered to other institutions outside the SCDIC through a future large-scale implementation-effectiveness study. Trial Registration ClinicalTrials.gov NCT04080167; https://clinicaltrials.gov/ct2/show/NCT04080167 International Registered Report Identifier (IRRID) DERR1-10.2196/16319

Overuse of clinical preventive services increases healthcare costs and may deprive underserved patients of necessary care. Up to 45% of cervical cancer screening is overuse. We conducted a systematic review of correlates of overuse of cervical cancer screening and interventions to reduce overuse. The search identified 25 studies (20 observational; 5 intervention). Correlates varied by the type of overuse measured (i.e., too frequent, before/after recommended age to start or stop screening, after hysterectomy), the most common correlates of overuse related to patient age (n = 7), OBGYN practice or provider (n = 5), location (n = 4), and marital status (n = 4). Six observational studies reported a decrease in overuse over time. Screening overuse decreased in all intervention studies, which used before-after designs with no control or comparison groups. Observational studies suggest potential targets for de-escalating overuse. Randomized clinical trials are needed to establish best practices for reducing overuse.

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.

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.

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, Highlights • Obesity is a significant clinical and public health issue. • 64% of obese/overweight primary care patients was trying to lose weight. • Weight loss attempts did not differ based on race, SES, or clinical factors. • Weight loss efforts were associated with perceived obesity status and readiness. • Greater shared decision-making was associated with making weight loss efforts.

Introduction: Routine comprehensive hematological care is critical for children with sickle cell disease (SCD) to prevent or mitigate complications and ensure optimal quality of life. Estimates of children with SCD with missed appointments or lost to care (no visit >1 year) range from 40-65%. Previously identified barriers to care include obstacles framed at the patient and provider levels including: forgetting appointments, competing demands, logistical challenges, health status, dissatisfaction with patient-provider relationships, and adverse clinic experiences. The Conceptual Framework of Access to Care Model proposes that access and engagement in health care involves a complex interaction of health care/systemic and patient/community factors. The purpose of this study was to apply this model to identify barriers and facilitators to SCD specialty care as part of the Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) project. Methods: Key informant interviews were conducted with a national sample of patient/caregivers as part of the DISPLACE study. DISPLACE is a large, multi-site study designed to examine stroke prevention practices and identify interventions to improve guideline-informed care. Due to the inclusion criteria for DISPLACE, all participants had sickle cell anemia (SCA) or a child with SCA. Participants were identified using purposive sampling with the goal of data saturation. Interviews included questions pertaining to barriers and facilitators to SCD specialty care, were audio recorded, and transcribed. Qualitative data were analyzed using a deductive-inductive approach with the Conceptual Framework of Access to Care Model as an initial coding framework. Themes were developed according to the theoretical model. Results: Themes and frequencies are in tables 1 and 2. Participants were 26 caregivers of children/adolescents with SCA (mean age = 39; 21 mothers, 4 fathers, 1 aunt) and one young adult (age 18, female). At the health care/systems level, participants reported a range of facilitators to care, with most factors focused on positive qualities of care provided by hematologists, clinic staff, and the overall health care system (appropriateness of care). The ability of the health care system to be available and accommodate patient needs (availability and accommodation) with supports to schedule, remember, and attend the visit in a convenient and timely way were also noted. At the patient/community level, family experiences with care impacted their ability to perceive a health care need and seek services (ability to perceive and seek). In addition, community supports, such as transportation and social support, helped families obtain care (ability to reach). Additional facilitators included insurance and work supports (ability to pay) and family engagement with SCD-specific education (ability to engage). Fewer barriers were reported by participants. At the health care/systems level, barriers included negative health care experiences (appropriateness) and complex health care processes and clinic location (availability and accommodation). At the patient/community level, participants reported difficulties reaching care due to transportation problems or competing demands (ability to reach) and insurance challenges (ability to pay). Conclusions: Health care access and engagement is complex and involves multi-level factors. As illustrated by patient perspectives in this study, a range of facilitators at the health care/systems level can promote access and engagement in care. Notably, participants predominantly focused on qualities of the provider and system that positively engaged them in care. At the patient/community level, clinics can provide support to mitigate complex health care processes and social determinants of health that impact care, such as through family navigators, psychosocial supports, transportation resources, and outreach clinics. Limitations included the focus on caregivers, the pediatric setting, and the lack of participants with other subtypes of SCD. In addition, while we attempted to reach participants with a range of health care experiences, our sample likely reflected families who were more adherent. Future work with families lost to care would contribute additional factors that can be targeted to promote consistent specialty care. Figure 1 Figure 1. Disclosures Adams: Global Blood Therapeutics: Consultancy, Honoraria. Kanter: Fulcrum Therapeutics, Inc.: Consultancy; Novartis: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Forma: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; Agios: Honoraria, Membership on an entity's Board of Directors or advisory committees; Beam: Honoraria, Membership on an entity's Board of Directors or advisory committees; Sanofi: Honoraria, Membership on an entity's Board of Directors or advisory committees; Graphite Bio: Consultancy; GuidePoint Global: Honoraria; Fulcrum Tx: Consultancy.

Introduction Emerging literature suggests body mass index (BMI) may be increasing in individuals with sickle cell disease (SCD), a condition historically associated with underweight status. However, the current prevalence of overweight and obese adults with SCD remains unclear in a country where high BMI is prevalent in the general population. We present an epidemiological analysis of the prevalence of overweight and obese individuals in a large representative sample of adult SCD patients, identifying associations between BMI, sociodemographic and clinical characteristics. Methods Using the Sickle Cell Disease Consortium (SCDIC) registry, we compiled a detailed clinical and demographical from a non-random sample of adults, aged 20-45 years. The SCDIC collects data from eight academic centers providing comprehensive care throughout the U.S. Adult participants were excluded from the analysis if they were under 20 years of age, pregnant at the time of enrollment, or were without medical records or patient enrollment surveys. Sociodemographic information and patient-reported outcomes, including pain frequency and severity, SCD complications, and hydroxyurea use, were collected at the time of enrollment. Non-SCD medical conditions and anthropometric measurements were abstracted from medical records. We stratified BMI, measured in kilograms per meters squared (kg/m2) following CDC criteria: underweight (30 kg/m2). An epidemiological analysis was performed of BMI in those with SCD. Bivariate analyses were conducted using Chi-square test, t-test, and ANOVA; non-parametric tests were used when appropriate. Data were analyzed using SAS 9.4 (SAS Institute; Cary, NC). Results In total, 1,664 adults met the inclusion criteria for this cross-sectional analysis of SCDIC registry data. The median BMI for the entire sample was 23.9 kg/m² (IQR: 21.1-28). The majority of participants were African American (99.1%), female (56.6%), and had an HbSS genotype (69.6%). The prevalence of an obese BMI (17.5%) was greater than underweight BMI (6.4%) among the entire cohort (Table 1). When compared to under/normal weight participants, those who were overweight/obese were older (median age 31.2 versus 29.3 years; p Conclusion To date, this is the largest analysis of adult BMI among individuals with SCD in the U.S. Among the eight SCDIC sites spanning from the Northeast to Southwest U.S., the prevalence of underweight BMI was less than that of overweight or obese BMI status, challenging previous understandings of weight status and further aligning with the growing rates of overweight and obesity in the general U.S. population. Significant associations between high BMI and hypertension, age, and pain intensity highlight an opportunity for further research to understand the impact of increasing BMI on SCD outcomes and non-SCD comorbidities. Figure 1 Figure 1. Disclosures Ibemere: bluebird bio Insights Council: Consultancy, Honoraria; Ugali Youth: Consultancy, Membership on an entity's Board of Directors or advisory committees. King: Health Resources and Services Administration: Research Funding; National Cancer Institute: Research Funding; Global Blood Therapeutics: Research Funding; National Heart, Lung, and Blood Institute: Research Funding. Hankins: Global Blood Therapeutics: Consultancy; UpToDate: Consultancy; Bluebird Bio: Consultancy; Vindico Medical Education: Consultancy. Tanabe: CSL Behring: Consultancy. Shah: Emmaus: Consultancy; GLG: Consultancy; Alexion: Speakers Bureau; Guidepoint Global: Consultancy; Bluebird Bio: Consultancy; CSL Behring: Consultancy; Novartis: Research Funding, Speakers Bureau; GBT: Consultancy, Research Funding, Speakers Bureau.

Implementing behavioral interventions for cardiovascular risk reduction and weight management is challenging in primary care. Primary care patients and providers were recruited for qualitative interviews to identify priorities and preferences for addressing weight management. Thematic analysis was used to identify relevant resources, barriers to lifestyle modification, health behavior change, and implementation of weight management strategies into care. Patients and providers prioritized increasing physical activity and healthy diets when managing chronic disease; and reported decreased patient motivation, knowledge, and limited organizational capacity and time among providers to deliver intensive interventions. Providers and patients disagreed regarding who owns accountability for weight management.

Prior research and systematic reviews have examined strategies related to weight management, less is known about lifestyle and behavioral counseling interventions optimally suited for implementation in primary care practices generally, and among racial and ethnic patient populations. Primary care practitioners may find it difficult to access and use available research findings on effective behavioral and lifestyle counseling strategies and to assess their effects on health behaviors among their patients. This systematic review compiled existing evidence from randomized trials to inform primary care providers about which lifestyle and behavioral change interventions are shown to be effective for changing patients' diet, physical activity and weight outcomes. Searches identified 444 abstracts from all sources (01/01/2004-05/15/2014). Duplicate abstracts were removed, selection criteria applied and dual abstractions conducted for 106 full text articles. As of June 12, 2015, 29 articles were retained for inclusion in the body of evidence. Randomized trials tested heterogeneous multi-component behavioral interventions for an equally wide array of outcomes in three population groups: diverse patient populations (23 studies), African American patients only (4 studies), and Hispanic/Mexican American/Latino patients only (2 studies). Significant and consistent findings among diverse populations showed that weight and physical activity related outcomes were more amenable to change via lifestyle and behavioral counseling interventions than those associated with diet modification. Evidence to support specific interventions for racial and ethnic minorities was promising, but insufficient based on the small number of studies.

Introduction: Without intervention, children with sickle cell anemia (SCA) have an 11% chance of overt ischemic stroke. The Stroke Prevention Trial in Sickle Cell Anemia (STOP) proved that children with SCA at increased risk of stroke can be identified using transcranial Doppler ultrasound (TCD) and, for those at risk, chronic red cell transfusion (CRCT) therapy is effective at preventing stroke. The 2014 National Heart, Lung, and Blood Institute (NHLBI) guidelines include annual TCD screening for children with SCA ages 2 - 16, and CRCT for primary and secondary ischemic stroke prevention. The NHLBI-funded Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) project was designed to 1.) evaluate current stroke screening and prevention practices in a 28-site consortium through intensive medical record review and an electronic data capture system, 2.) determine barriers and facilitators to stroke prevention practices through qualitative methods, and 3.) design and deliver interventions to increase rates of 'sickle stroke screening' using implementation strategies. The purpose of this abstract is to describe initial (pre-study) consortium actions following abnormal TCD results including whether all children had a repeat TCD within the next 4 weeks, whether they initiated CRCT, characteristics of which children received CRCT, and what alternate treatments were used. Methods: DISPLACE data collection years were 2012 - 2016. 5247 children with SCA who met criteria for annual TCD screening were entered into the electronic data capture system with clinical and demographic information. 163 children with abnormal TCD results were identified from the cohort database. Additional data were collected and subsequently adjudicated including timing of follow-up testing (repeat TCD or MRI) after abnormal TCD, implementation of CRCT following abnormal TCD, alternate treatment following abnormal TCD, and whether the STOP protocol was implemented. Data were analyzed using descriptive statistics. Results: In response to abnormal TCD, 75% of children had a repeat TCD ordered (Table 1). Of these, most repeat TCDs were completed within 3 months, with Conclusions: In this nationally representative sample of children with SCA at risk for stroke, nearly ¾ of children had a repeat TCDs, suggesting confirmation of abnormal results was common prior to beginning CRCT. Notably, there were a large number of ischemic strokes in children when CRCT was delayed futher confirming the utility of the screening and stroke prevention protocol. An additional key concern identified in this study were the barriers to STOP protocol implementation. Common reasons for lack of implementation included the parent's decision for HU instead of CRCT, delays in CRCT initiation, and delays in obtaining repeat TCDs. Difficulties implementing the STOP protocol suggest the need for interventions for more rapid initiation of CRCT and stroke prevention. Disclosures Kanter: AGIOS: Membership on an entity's Board of Directors or advisory committees; Novartis: Consultancy; Sanofi: Consultancy; bluebird bio, inc: Consultancy, Honoraria; Medscape: Honoraria; Guidepoint Global: Honoraria; GLG: Honoraria; Jeffries: Honoraria; Cowen: Honoraria; Wells Fargo: Honoraria; NHLBI Sickle Cell Advisory Board: Membership on an entity's Board of Directors or advisory committees; SCDAA Medical and Research Advisory Board: Membership on an entity's Board of Directors or advisory committees; BEAM: Membership on an entity's Board of Directors or advisory committees.

Introduction: The NHLBI funded Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) study was designed to improve implementation of stroke prevention guidelines in children with sickle cell anemia (SCA), particularly implementation of transcranial Doppler (TCD) ultrasound for identifying individuals at risk of stroke. The study consists of 3 phases: 1) evaluating current stroke risk screening practices, 2) exploring barriers and facilitators to guideline implementation (needs assessment), and 3) designing and implementing interventions to improve stroke risk screening. A key barrier identified through qualitative methods during the needs assessment was a gap in education, including an overall lack of understanding among patients and caregivers of the purpose of TCD screening. This abstract describes the process of developing one of the interventions for phase 3, a rebranding and educational initiative. Methods: During the needs assessment, 27 key informant interviews and 173 complete surveys were conducted with individuals with SCA and their caregivers. Transcripts from the interviews and survey responses were reviewed to better understand the extent of educational gaps described by families as well as to guide initial rebranding prototypes. Prototypes were developed by the study team, including a new name and logo for TCD as well as an infographic. An interview guide was then created to obtain feedback on the prototypes from individuals with SCA and/or the parent or primary caregiver from two sites in the consortium. Cue cards with prototypes were included with prompts for the "think aloud" method to be applied during interviews. Cue cards were presented first with prototypes for the new name in black font on a white background to solicit feedback on the wording alone. Then, cue cards included various layouts, fonts, and graphics with the prototype names for in-depth feedback on the logo appearance. Finally, participants were asked questions pertaining to the infographic. Results: Twenty interviews were conducted with individuals with SCA and/or the parent/caregiver at two DISPLACE sites. Almost all participants (95%) made the connection between the wording prototypes and TCD without prompting. Many participants expressed that the word "stroke" in both options was "scary," and sometimes chose the option that was "less scary to them." However, many participants also felt that the word "stroke" was necessary to explain the reason for the procedure and would prompt families to ask about the screening as opposed to making them more fearful. The majority of participants (60%) chose "Sickle Stroke Screen" over "Stroke Risk Screen." Participants reported preferring this wording because it is specific to SCA, was easier to remember and represented a less "scary" option. The most commonly preferred logo is presented in Figure 1. Participant reasons for selecting this option were: it is easier to read; they preferred the stacked layout; it is less spread out; they liked the bold letters; it is more eye catching; and it includes the words "sickle cell" in the logo. When asked about preferences for an infographic, the majority described including a picture of a brain. Nearly all participants believed a reassuring message was needed to balance out the fear of the word "stroke." The message, "knowledge is power" provided this balance and resonated with nearly all participants (95%). Figure 2 presents the infographic developed based on participant feedback. Conclusions: Results from this educational rebranding effort highlight the importance of understanding patient and family educational gaps and incorporating their perspective and feedback into educational campaigns. The new logo and infographic were integrated into an educational pamphlet, informative posters and other material designed by the DISPLACE site principal investigators. Part 3 of the study is underway including implementation of the educational initiative at the DISPLACE sites. The new terminology and logo have also been broadly distributed throughout the US through community-based organizations to other patients, families, and stakeholders. Disclosures Kanter: AGIOS: Membership on an entity's Board of Directors or advisory committees; NHLBI Sickle Cell Advisory Board: Membership on an entity's Board of Directors or advisory committees; SCDAA Medical and Research Advisory Board: Membership on an entity's Board of Directors or advisory committees; Wells Fargo: Honoraria; Jeffries: Honoraria; Cowen: Honoraria; bluebird bio, inc: Consultancy, Honoraria; Novartis: Consultancy; Sanofi: Consultancy; Medscape: Honoraria; Guidepoint Global: Honoraria; GLG: Honoraria; BEAM: Membership on an entity's Board of Directors or advisory committees.

BACKGROUND: Children with sickle cell anemia (SCA) are at increased risk for stroke. In 2014, the National Heart, Lung, and Blood Institute (NHLBI) developed guidelines for stroke prevention in SCA informed by the Stroke Prevention Trial in Sickle Cell Anemia (STOP) and Optimizing Primary Stroke Prevention in Sickle Cell Anemia (STOP II) trials. The guidelines specify the use of transcranial doppler (TCD) screening and intervention with chronic red cell transfusion (CRCT) in children with SCA who have TCD indication of high stroke risk. The purpose of this study was to describe real-world practice patterns of stroke risk screening and intervention in sites that participated in the Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) Consortium. PROCEDURE: Site investigators completed a survey during the formative stages of the study to evaluate their TCD practices relative to the STOP studies. Descriptive statistics and analysis of free text comments for more complex practices were evaluated. RESULTS: Results suggested universal acceptance of annual TCD screening and initiation of CRCT following an abnormal result among the DISPLACE Consortium, consistent with NHLBI recommendations. However, there was wide variation in methods for conducting TCD screenings (e.g., dedicated Doppler versus TCD imaging), classifying TCD results, and actions taken for conditional and inadequate results. CONCLUSIONS: Annual TCD screening and initiation of CRCT are critical stroke prevention practices that were universally embraced in the consortium. Additional research would be beneficial for informing clinical practices for areas in which guidelines are absent or unclear.

Background Despite increased attention to dentists’ roles in curbing opioid misuse, abuse, and diversion, information regarding prescribing practices and the frequency of multiple concurrent opioid prescriptions among dental patients is limited. Methods The authors reviewed South Carolina prescription drug monitoring program data representing dispensed medication for patients prescribed at least 1 opioid by a dentist during the most recently available 2-year time frame (2012-2013). The authors used descriptive analyses to examine the types and frequency of dental opioid prescriptions and the frequency of existing multiple concurrent opioid prescriptions among dental patients. Results Nearly all dispensed dental opioid prescriptions (99.9%; n = 653,650) were for immediate-release opioids and were initial prescription fills (96.2%). Hydrocodone (76.1%) and oxycodone (12.2%) combination products were the most frequently dispensed opioids prescribed by dentists. People younger than 21 years received 11.2% of dentist-prescribed opioids dispensed. Patients with multiple concurrent opioid prescriptions were identified within 30-day (n = 113,818), 90-day (n = 166,124), and 180-day (n = 205,576) time frames. Conclusions Dentists prescribed a high volume of the immediate-release opioids dispensed in South Carolina. A notable minority of dental patients had incidents of multiple preexisting opioid prescriptions, a factor implicated in patient misuse, abuse, overdose, and diversion. Practical Implications Use of a prescription drug monitoring program before prescribing provides a record of controlled substances dispensed to a patient and may inform prescribing, coordination of care, and addiction screening or referral. Patients should receive information regarding misuse behaviors and their risks, as well as the importance of secure storage and disposal of leftover opioid medications.

Objectives A small but significant number of patients make frequent emergency department (ED) visits to multiple EDs within a region. We have a unique health information exchange (HIE) that includes every ED encounter in all hospital systems in our region. Using our HIE we were able to characterize all frequent ED users in our region, regardless of hospital visited or payer class. The objective of our study was to use data from an HIE to characterize patients in a region who are frequent ED users (FEDUs). Methods We constructed a database from a cohort of adult patients (18 years old or older) with information in a regional HIE for a 1-year period beginning in April 2012. Patients were defined as FEDUs (those who made four or more visits during the study period) and non-FEDUs (those who made fewer than four ED visits during the study period). Predictor variables included age, race, sex, payer class, county of residence, and International Classification of Diseases, Ninth Revision codes. Bivariate (χ(2)) and multivariate (logistic regression) analyses were performed to determine associations between predictor variables and the outcome of being a FEDU. Results The database contained 127,672 patients, 12,293 (9.6%) of whom were FEDUs. Logistic regression showed the following patient characteristics to be significantly associated with the outcome of being a FEDU: age 35 to 44 years; African American race; Medicaid, Medicare, and dual-pay payer class; and International Classification of Diseases, Ninth Revision codes 630 to 679 (complications of pregnancy, childbirth, and puerperium), 780 to 799 (ill-defined conditions), 280 to 289 (diseases of the blood), 290-319 (mental disorders), 680 to 709 (diseases of the skin and subcutaneous tissue), 710 to 739 (musculoskeletal and connective tissue disease), 460 to 519 (respiratory disease), and 520 to 579 (digestive disease). No significant differences were noted between men and women. Conclusions Data from an HIE can be used to describe all of the patients within a region who are FEDUs, regardless of the hospital system they visited. This information can be used to focus care coordination efforts and link appropriate patients to a medical home. Future studies can be designed to learn the reasons why patients become FEDUs, and interventions can be developed to address deficiencies in health care that result in frequent ED visits.

Background and Importance: Linking data is a critical feature of precision medicine initiatives that involves integrating information from multiple sources to improve researchers’ and clinicians’ ability to deliver care. To date, we have limited understanding of how racial and ethnic minorities perceive linking data as it relates to precision medicine. Objective: The aim of this study was to identify how demographics, co-morbidities, and beliefs about precision medicine influence two outcomes related to linking data: beliefs about linking data and concerns about linking data among minority men. Methods: Adult individuals were recruited from primary care practices at a large clinical research university. 375 individuals were invited to participate and 124 completed a cross-sectional survey that included questions about demographic characteristics, comorbidities, beliefs, benefits, and limitations of precision medicine, and two outcomes of interest: beliefs about the value of linking data and concerns about linking data. Descriptives, bivariate, and multivariable regression were conducted in SAS version 9.4. Results: Participants had positive perceptions about beliefs about linking data for precision medicine (M=4.05/5) and average concern about linking data (M=2.1/5). Final multivariable models revealed that higher levels of loneliness are associated with more positive beliefs about linking data (B=0.41, p=0.027). Races other than Black or African American (B=-0.64, p=0.009) and those with lower perceived limitations of precision medicine were less likely to be concerned about linking data (B=-0.75, p=-.0006). Conclusion and Relevance: Our results contribute to the lack of literature about perceptions of linking data for use in clinical and research studies among men. Better understanding of factors associated with more positive perceptions of data linkages could help improve how researchers recruit and engage participants. Citation Format: Melanie Jefferson, Gayenell Magwood, Cathy Melvin, Oluwole Babatunde, Chanita Hughes Halbert, Caitlin G. Allen. Understanding men’s concerns about linking health data in the context of precision medicine [abstract]. In: Proceedings of the AACR Virtual Conference: Thirteenth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2020 Oct 2-4. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(12 Suppl):Abstract nr PO-074.

The Transdisciplinary Collaborative Center (TCC) in Precision Medicine for Minority Men’s Health was established at the Medical University of South Carolina (MUSC) in 2015 to address disparities in the translation of precision medicine approaches among racial minority groups. This regional consortium focuses on three primary areas: (1) the development of a consortium of regional and national partners, (2) conducting transdisciplinary research examining synergistic effects of biological, social, physiological, and clinical determinants of chronic disease risks and outcomes, and (3) dissemination and implementation of precision medicine approaches, with an emphasis on reducing disparities in health care and outcomes among minority men. Given consistent calls to better translate precision medicine approaches and the focus of this consortium on addressing disparities among minority men, we provide an overview of our experience in developing the MUSC TCC, including barriers and facilitators to conducting translational research on minority men’s health issues in the context of precision medicine. Lessons learned and areas for improvement include providing enough time to create consistent partnerships and community engagement to improve recruitment and retention, identifying unique ways to engage diverse partners from across the region and nation, and better approaches to dissemination and communication for large partnerships focusing on precision medicine.

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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

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.

Importance No instrument exists to assess quality of life (QOL) in adult cochlear implant (CI) users that has been developed and validated using accepted scientific standards. Objective To develop a CI-specific QOL instrument for adults in accordance with the Patient Reported Outcomes Measurement Information System (PROMIS) guidelines. Design, Setting, and Participants As required in the PROMIS guidelines, patient focus groups participated in creation of the initial item bank. Twenty-three adult CI users were divided into 1 of 3 focus groups stratified by word recognition ability. Three moderator-led focus groups were conducted based on grounded theory on December 3, 2016. Two reviewers independently analyzed focus group recordings and transcripts, with a third reviewer available to resolve discrepancies. All data were reviewed and reported according to the Consolidated Criteria for Reporting Qualitative Research. The setting was a tertiary referral center. Main Outcomes and Measures Coded focus group data. Results The 23 focus group participants (10 [43%] female; mean [range] age, 68.1 [46.2-84.2] years) represented a wide range of income levels, education levels, listening modalities, CI device manufacturers, duration of CI use, and age at implantation. Data saturation was determined to be reached before the conclusion of each of the focus groups. After analysis of the transcripts, the central themes identified were communication, emotion, environmental sounds, independence and work function, listening effort, social isolation and ability to socialize, and sound clarity. Cognitive interviews were carried out on 20 adult CI patients who did not participate in the focus groups to ensure item clarity. Based on these results, the initial QOL item bank and prototype were developed. Conclusions and Relevance Patient focus groups drawn from the target population are the preferred method of identifying content areas and domains for developing the item bank for a CI-specific QOL instrument. Compared with previously used methods, the use of patient-centered item development for a CI-specific QOL instrument will more accurately reflect patient experience and increase our understanding of how CI use affects QOL.

BACKGROUND Longer lifespans conferred by antiretroviral therapy result in more time exposed to cancer risk for people living with HIV/AIDS (PLWHA). Given limited diversity in AIDS Malignancy Consortium (AMC) clinical trials, there is need for new approaches to educate PLWHA in order to improve awareness and participation in AMC trials.METHODS With input from a community advisory board, Project ACCRUE (AMC Clinical Trials at Carolina Ramp Up Enrollment) conducted a key informant interview with service providers; online organizational surveys of AMC trial awareness and resource needs; and "lunch and learn" educational sessions, including pre- and post-intervention knowledge assessments.RESULTS Providers indicated that transportation, mistrust of the medical community, and affordability were barriers to trial participation, while printed educational materials could facilitate trial recruitment. Providers indicated that their clients had concerns about participating in trials, but also recognized several benefits of participation including access to medical personnel and treatment, receipt of monetary incentives, and a feeling of satisfaction from helping others. In lunch and learn sessions, use of an audience response system to collect questionnaire data improved scores on knowledge-based items [S(55) = 460; P < .0001] compared to a pencil and paper test [S(20) = 12.5; P = .6541].LIMITATIONS Generalizability may have been compromised by the small sample size. Long-term recall was not measured, and the short retest interval may have impacted post-intervention assessments.CONCLUSIONS Service providers recognize the benefits of working with researchers to educate patients about HIV-related cancers and participation in clinical trials. Lunch and learn sessions improved knowledge and perceptions about clinical trials for PLWHA.

Context Lesbian, gay, bisexual, and transgender (LGBT) people are at increased risk for the adverse effects of tobacco use, given their high prevalence of use, especially smoking. Evidence regarding cessation is limited. To determine if efficacious interventions are available and to aid the development of interventions, a systematic review was conducted of grey and peer-reviewed literature describing clinical, community, and policy interventions, as well as knowledge, attitudes, and behaviors regarding tobacco use cessation among LGBT people. Evidence acquisition Eight databases for articles from 1987 to April 23, 2014, were searched. In February−November 2013, authors and researchers were contacted to identify grey literature. Evidence synthesis The search identified 57 records, of which 51 were included and 22 were from the grey literature; these were abstracted into evidence tables, and a narrative synthesis was conducted in October 2013−May 2014. Group cessation curricula tailored for LGBT populations were found feasible to implement and show evidence of effectiveness. Community interventions have been implemented by and for LGBT communities, although these interventions showed feasibility, no rigorous outcome evaluations exist. Clinical interventions show little difference between LGBT and heterosexual people. Focus groups suggest that care is needed in selecting the messaging used in media campaigns. Conclusions LGBT-serving organizations should implement existing evidence-based tobacco-dependence treatment and clinical systems to support treatment of tobacco use. A clear commitment from government and funders is needed to investigate whether sexual orientation and gender identity moderate the impacts of policy interventions, media campaigns, and clinical interventions.

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.]

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. 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. 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). 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. Low-income survivors should be counseled on the importance of ET and offered support services to promote initiation and long-term adherence.

A well-documented challenge in moving public health research into practice is the extended time it takes to implement findings in clinical practice and communities. The Evidence Academy model (Rohweder et al., 2016), developed and first used in North Carolina, is a pragmatic, action-oriented model that aims to shorten this timeline by communicating cutting-edge findings directly to those who can use them and convening individuals working in a single topic area to network and plan activities for the future. The University of Pennsylvania Collaborating Center of the Cancer Prevention and Control Research Network (CPCRN) held three conferences based on the Evidence Academy model: one about prostate cancer in 2015, a second on food access and obesity prevention in 2017, and a third about tobacco control science in 2018. A diverse planning committee of stakeholders helped shape the content, focus,and format of each conference. Local and national experts presented findings to regional audiences of researchers, practitioners, government leaders, and community members. Each Evidence Academy included collaborators and speakers from other Prevention Research Centers (PRCs) and CPCRN network sites. Evaluations and outcomes indicated that the events were successful in achieving their goals and fostered ongoing relationships among attendees. This paper illustrates how the Evidence Academy model was used in a different region and describes lessons learned and follow-up activities that were initiated via the Evidence Academy and with input from participants. Lessons learned may be helpful in developing and evaluating future adaptations of the Evidence Academy model and/or the effectiveness of its components.