Awareness and Use of the Sickle Cell Disease Toolbox by Primary Care Providers in North Carolina.

BACKGROUND: Sickle cell disease (SCD) is a complex chronic blood disorder characterized by severe disease complications ideally managed by both hematologists and primary care providers (PCP's). PCP's report knowledge gaps and discomfort with SCD management. Our team developed and a decision support tool for SCD management (SCD Toolbox) based on the National Heart, Lung, and Blood Institute's SCD guidelines. We surveyed PCPs in North Carolina (NC) prior to formal dissemination to determine current co-management practices, assess toolbox acceptability, use, format preferences, and understand which algorithms would be most helpful. METHOD: A 23-item baseline needs assessment survey was disseminated to PCPs throughout NC. RESULTS: A total of 63 medical providers responded to the survey and of these respondents, 64% reported caring for 1 to 10 patients with SCD. Only 39% of PCPs reported regular communication with an SCD specialist. Providers reported the highest level of awareness of the pediatric and adult health maintenance tools (41% and 39% respectively) and highest use of the pediatric (26%) and adult (28%) health maintenance tools. Respondents also expressed a desire to have access to multiple toolbox formats (37%) (website, mobile app and/or paper). LIMITATIONS: The use of a convenience sample and low survey response are study limitations which hinder generalizability. CONCLUSIONS: PCPs rarely co-managed with a specialist, had low awareness and use of SCD toolbox, and requested multiple formats for the toolbox.

A Needs Assessment of Persons With Sickle Cell Disease in a Major Medical Center in North Carolina.

BACKGROUND Sickle cell disease (SCD) is a complex disease associated with many complications and a shortened lifespan. In 2016, the National Heart, Lung and Blood Institute funded 8 centers in the United States to form the Sickle Cell Disease Implementation Consortium, with the goal of improving SCD care. The aim of our study was to describe SCD self-efficacy, pain interference, and barriers to care from the perspective of persons with SCD in the North Carolina center.METHODS Persons with SCD, aged 15 and older were recruited from a large SCD center in North Carolina. Surveys, focus groups, and interviews were completed.RESULTS Fifty-one people completed a survey, and 14 people completed an interview or focus group. Barriers identified in the survey included self-care barriers, misconceptions related to hydroxyurea (an oral medication that reduces rates of pain crisis), limited provider knowledge, and stigma. Concerning self-efficacy, participants reported that they were able to manage their pain symptoms most of the time. Pain interfered most with the ability to participate in social and day-to-day activities.Common themes from the focus groups and interviews included misconceptions about hydroxyurea, pain, provider knowledge, stigma, co-management, transportation, and insurance. Recommendations to improve care included the use of case managers, utilization of treatment guidelines, individualized pain protocols, and effective co-management by providers.LIMITATIONS Participants were recruited from 1 SCD center and may not be representative of the entire SCD population in North Carolina.CONCLUSIONS Participants described many perceived barriers to care, and their responses suggest a need for improvements in patient hydroxyurea education, provider knowledge, and care coordination.

Dissemination of Evidence-Based Recommendations for Sickle Cell Disease to Primary Care and Emergency Department Providers in North Carolina: A Cost Benefit Analysis.

Background: Sickle cell disease (SCD) is a genetic condition affecting primarily individuals of African descent, who happen to be disproportionately impacted by poverty and who lack access to health care. Individuals with SCD are at high likelihood of high acute care utilization and chronic pain episodes. The multiple complications seen in SCD contribute to significant morbidity and premature mortality, as well as substantial costs to the healthcare system. Objectives: SCD is a complex chronic disease resulting in the need for primary, specialty and emergency care. Many providers do not feel prepared to care for individuals with SCD, despite the existence of evidence-based guidelines. We report the development of a SCD toolbox and the dissemination process to primary care and emergency department (ED) providers in North Carolina (NC). We report the effect of this dissemination on health-care utilization, cost of care, and overall cost-benefit. Methods: The SCD toolbox was adapted from the National Heart, Lung, and Blood Institute recommendations. Toolbox training was provided to quality improvement specialists who then disseminated the toolbox to primary care providers (PCPs) affiliated with the only NC managed care coordination system and ED providers. Tools were made available in paper, online, and in app formats to participating managed care network practices (n=1 800). Medicaid claims data were analyzed for total costs and benefits of the toolbox dissemination for a 24-month pre- and 18-month post-intervention period. Results: There was no statistically significant shift in the number of outpatient specialty visits, ED visits or hospitalizations. There was a small decrease in the number of PCP visits in the post-implementation period. The dissemination resulted in a net cost-savings of $361 414 ($14.03 per-enrollee per-month on average). However, the estimated financial benefit associated with the dissemination of the SCD toolbox was not statistically significant. Conclusions: Although we did not find the expected shift to increased PCP visits and decreased ED visits and hospitalizations, there were many lessons learned.

Patient Perspectives of Sickle Cell Management in the Emergency Department.

Sickle cell disease (SCD) is a common genetic blood disorder predominantly affecting African Americans in the United States. The objective of this study was to use a multimethods approach to describe how patients with SCD in North Carolina perceive the care they receive in emergency departments (EDs). Fourteen participants completed an interview (n = 10) or 2 focus groups (n = 2 per focus group) and 51 completed surveys. Sixty percent of participants with pain attack "very much" or "quite a bit" avoided going to the ED for care because of prior bad experiences and 50% of participants reported waiting 120 minutes or more in the ED for treatment of their sickle cell pain. Participants reported that stigma associated with provider perception of drug-seeking behavior is a persistent problem in the ED. Participant recommendations warrant further investigation to address persistent SCD quality-of-care concerns in the ED.

An Interrupted Time Series Analysis of the Dissemination of a Sickle Cell Vaso-Occlusive Episode Treatment Algorithm and a Case Management Referral Form for Individuals With Sickle Cell Disease in the Emergency Department.

BACKGROUND: Sickle cell disease is associated with frequent vaso-occlusive episode and emergency department visits. Our group developed (1) a vaso-occlusive episode treatment algorithm based on the National Heart, Lung, and Blood Institute recommendations, and (2) a case management referral form to identify social behavioral health needs of patients with sickle cell disease in the emergency department. The aims of this project were to (1) disseminate the vaso-occlusive episode algorithm and case management referral form, and (2) to evaluate the individual provider-reported awareness, use, and preferred method of access to each tool among emergency department providers in North Carolina. METHODS: An interrupted time series analysis was used to study the impact that an educational effort had on the awareness of a sickle cell vaso-occlusive episode treatment algorithm and a case management referral form. A targeted list was developed to identify the providers working in emergency departments with the largest number of sickle cell disease patient visits. In-service education was provided to targeted emergency departments in North Carolina over a period of 3 years. The vaso-occlusive episode algorithm and case management referral form were put up on the websites of professional organizations. Surveys were provided to emergency department providers at these targeted emergency departments with a baseline and post dissemination at 20 and 32 months for assessing the provider awareness, use, and preferred method of access of the tools. Additional feedback could be given by the participants through telephone interviews. Descriptive statistics were obtained, and content analysis was performed on interviews. RESULTS: We received survey responses for the following periods: baseline (T1, n = 190), post dissemination at 20 (T2, n = 142), and 32 months (T3, n = 93). Awareness of the tools was between 42% (baseline) and 41% (post dissemination at T2, T3) for the vaso-occlusive episodes algorithm and 25% (baseline) and 29% (post dissemination at T2, T3) for the case management referral form. However, use of these tools was found to be low as only 19% of the emergency department providers used the vaso-occlusive episode algorithm at T1 and 13% T2, while 5% of emergency department providers used the case management referral form at T1 and 6% at T2. With further education about the tools, an increase in the usage of the tools was observed T3, which was 29% for the vaso-occlusive episodes algorithm and 9% for the case management referral form. Lack of incorporation of the decision support tools into emergency department processes was observed to be an overarching barrier to dissemination of the tools identified in interviews (n = 8). CONCLUSIONS: This study can be used to inform future strategies on dissemination of evidence-based tools to emergency department providers.

Sickle-Cell Disease Co-Management, Health Care Utilization, and Hydroxyurea Use.

BACKGROUND: Sickle-cell disease (SCD) causes significant morbidity, premature mortality, and high disease burden, resulting in frequent health care use. Comanagement may improve utilization and patient adherence with treatments such as Hydroxyurea. The purpose of this study was to describe acute-care utilization in Medicaid-enrolled patients with SCD, patient factors associated with comanagement, and adherence to Hydroxyurea. METHODS: Data from 2790 patients diagnosed with SCD, age 1 to 65+ years, enrolled at least 1 month in North Carolina Medicaid between March 2016 and February 2017, were analyzed. Outpatient visits were categorized as primary care, hematologist, and nonhematologist specialist. Nurse practitioners or physician assistants with unidentified specialty type or family practice were categorized separately. Comanagement was defined as a minimum of 1 primary care and 1 hematologist visit/patient during the study period. RESULTS: There were notable age-related differences in utilization of health care services. Only 34.82% of the sample was comanaged. Comanagement was higher in the 1-to-9-year-old (44.88%) and 10-to-17-year-old groups (39.22%) versus the 31-to-45-year-old (30.26%) and 65+-year-old (18.75%) age groups. Age had the greatest influence (AUC = 0.599) on whether or not a patient was comanaged. Only a third of the sample (32.24%) had at least 1 Hydroxyurea (HU) prescription. Age was the most predictive factor of good HUadherence (AUC = 0.6503). Prediction by comanagement was minimal with an AUC = 0.5615. CONCLUSION: Comanagement was a factor in predicting HUadherence, but further studies are needed to identify the frequency and components of comanagement needed to increase adherence and reduce acute care utilization.