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

2021 ◽  
Vol 12 ◽  
pp. 215013272110490
Author(s):  
Stephanie O. Ibemere ◽  
Paula Tanabe ◽  
Emily Bonnabeau ◽  
Gary Rains ◽  
Kern Eason ◽  
...  

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.

2015 ◽  
Vol 108 (9) ◽  
pp. 531-536 ◽  
Author(s):  
Lauren N. Whiteman ◽  
Carlton Haywood ◽  
Sophie Lanzkron ◽  
John J. Strouse ◽  
Leonard Feldman ◽  
...  

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5923-5923
Author(s):  
Lisa Marie Shook ◽  
Christina Bennett Farrell ◽  
Karen A. Kalinyak ◽  
Stephen C Nelson ◽  
Brandon M. Hardesty ◽  
...  

Abstract Sickle Treatment and Outcomes Research in the Midwest (STORM) is a regional sickle cell network, funded by the Health Resources and Services Administration Treatment Demonstration Project (HRSA U1EMC27863), established to improve outcomes for individuals with sickle cell disease (SCD) living in Indiana, Illinois, Michigan, Minnesota, Ohio and Wisconsin. The STORM network is led by pediatric and adult hematologists who coordinate network activities in each state, along with a Regional Coordinating Center that organizes efforts throughout the Midwest. The goal of the STORM network is to increase the number of pediatric and adult primary care providers (PCP) who are knowledgeable about the management and treatment of SCD, and who are willing to prescribe and manage hydroxyurea therapy as a means to improve medical care for the approximately 15,000 individuals living with SCD in the Midwest. One PCP engagement strategy that has been implemented to increase provider knowledge in the region is replication of the Project ECHOTM (Extension for Community Healthcare Outcomes) telementoring model. Project ECHO was developed by the University of New Mexico to utilize low-cost, high-impact video technology to link expert inter-disciplinary specialist teams with primary care providers to improve management of chronic diseases. This guided practice telementoring model delivers complex specialty medical care to underserved areas, reduces health disparities, and increases workforce capacity. Project ECHO's methodology is based on 1) using telehealth technology to build healthcare resources where they are scarce; 2) sharing best practices to reduce variation in clinical care; 3) utilizing practice-based learning to develop specialty expertise among providers; and 4) monitoring and evaluating provider outcomes. Project ECHO has demonstrated improved healthcare outcomes in Hepatitis C and several other chronic diseases, and is now being piloted by STORM to test its feasibility and applicability for SCD by using a regional approach with CME accreditation. STORM network site physician leads in each state are recruiting multi-disciplinary primary care teams to participate as "spokes" in monthly SCD TeleECHO clinics. The "hub" led by the STORM Regional Coordinating Center, located at Cincinnati Children's Hospital Medical Center, coordinates implementation and evaluation of the telementoring clinics, delivered through monthly teaching sessions. STORM TeleECHO participants log onto an internet-based virtual meeting site, using a webcam to interact during the session. STORM TeleECHO clinics include brief didactic presentations from nationally-recognized SCD content experts with topics and curriculum based on the National Heart Lung and Blood Institute Evidence-Based Management of Sickle Cell Disease guidelines released in 2014. TeleECHO teaching clinics also include 1-2 de-identified, HIPAA protected case discussions (pediatric and adult) presented by providers who would like medical and psychosocial feedback on management of challenging clinical scenarios. Providers participating in the STORM TeleECHO complete an initial survey assessing knowledge and comfort levels, practice behaviors (including hydroxyurea prescribing practices) and clinic demographics. Satisfaction surveys are sent to participants after each session as part of the CME-credit evaluation. Follow-up surveys at 6 months and 1 year will assess satisfaction, knowledge, comfort level and changes in practice. STORM's TeleECHO was launched in March 2016. Preliminary data indicate an interest in STORM TeleECHO teaching sessions by both pediatric and adult providers across the Midwest region. Future efforts will expand the network to more PCPs in the region, while improving the applicability and utility of STORM TeleECHO in SCD through provider assessment. Disclosures Ware: Global Blood Therapeutics: Consultancy; Biomedomics: Research Funding; Bristol Myers Squibb: Research Funding; Addmedica: Research Funding; Nova Laboratories: Consultancy; Bayer Pharmaceuticals: Consultancy.


2019 ◽  
Vol 8 (8) ◽  
pp. 1154
Author(s):  
Arch G. Mainous ◽  
Benjamin Rooks ◽  
Rebecca J. Tanner ◽  
Peter J. Carek ◽  
Vandy Black ◽  
...  

Adult sickle cell disease (SCD) patients frequently transition from pediatric hematology to adult primary care. We examined healthcare utilization for adult patients with SCD with shared care between hematologists and primary care providers (PCP). We analyzed the OneFlorida Data Trust, a centralized data repository of electronic medical record (EMR) data from eight different health systems in Florida. The number of included adults with SCD was 1147. We examined frequent hospitalizations and emergency department (ED) visits by whether the patient had shared care or single specialty care alone. Most patients were seen by a PCP only (30.4%), followed by both PCP and hematologist (27.5%), neither PCP nor hematologist (23.3%), and hematologist only (18.7%). For patients with shared care versus single specialist care other than hematologist, the shared care group had a lower likelihood of frequent hospitalizations (OR 0.63; 95% CI 0.43–0.90). Similarly, when compared to care from a hematologist only, the shared care group had a lower likelihood of frequent hospitalizations (OR 0.67; 95% CI 0.47–0.95). There was no significant relationship between shared care and ED use. When patients with SCD have both a PCP and hematologist involved in their care there is a benefit in decreased hospitalizations.


2016 ◽  
Vol 8 (1) ◽  
pp. 37-40 ◽  
Author(s):  
Joseph Lunyera ◽  
Charles Jonassaint ◽  
Jude Jonassaint ◽  
Nirmish Shah

Background: Sickle cell disease (SCD) is a complex chronic disease requiring multidisciplinary care that involves primary care physicians (PCPs) working with a hematologist or SCD specialists. However, PCPs often lack access to SCD specialists and are unaware of SCD guidelines or efficacious treatment. Methods: We partnered with Community Care of North Carolina (CCNC) to identify assigned PCPs for SCD patients with Medicaid across North Carolina. CCNC network administrators distributed a web-based questionnaire for completion. The questionnaire involved 12 self-reported items on a yes-no or a 1 to 5 Likert-type scale that assessed PCP attitudes toward SCD care, awareness of recent guidelines, and comanaging hydroxyurea. Results: Of the 53 PCPs who completed the electronic survey, 73% felt they were comfortable with the number of SCD patients in their practice. Most PCPs reported having infrequent communications with an SCD specialist (67%) and most were also not aware of the 2014 SCD guidelines (66%). Many reported that they would frequently use the new SCD guidelines if provided to them (76%). Furthermore, 51% of PCPs expressed comfort with using mobile apps to access SCD guidelines and provided email contact to receive further information. The majority also reported being comfortable comanaging hydroxyurea with an SCD specialist (65%). Conclusion: Few PCPs in North Carolina were aware of the new SCD guidelines or had regular communication with an SCD specialist. The majority of PCPs, however, demonstrated a favorable attitude toward receiving the SCD guidelines and comanaging hydroxyurea with a specialist. In response to this gap in care, we have developed a mobile-based SCD toolbox specifically for PCPs to provide guidelines, algorithms, and a method to communicate with local SCD specialists. With the interest in receiving these guidelines, we are confident the toolbox will provide an easy to use platform to assist PCPs to utilize the SCD guidelines.


2020 ◽  
Vol 12 (1) ◽  
pp. e2020032
Author(s):  
Vincenzo De Sanctis

Abstract. Women with sickle cell disease (SCD) are of particular concern due to the significantly increased risk of pregnancy-related morbidity, mortality, and adverse outcomes. They have limited knowledge of the risks of pregnancy and childbirth as well as of the benefits and risks from the use of contraceptives. Thus, there is urgent need for appropriate information about reproductive family planning to reduce unintended pregnancy. Any decision regarding the use of contraceptives has to be based on the efficacy and the risks and benefits of the method used. Both the World Health Organization (WHO) and the Center for Disease Control and Prevention (CDC) have developed, published, and updated evidence-based guidelines for medical providers for the use of contraceptives in patients with specific medical chronic conditions. This article provides an overview of the present knowledge for the use of contraceptives in women with SCD. We believe that the collaboration between health care professionals (hematologists, obstetricians, endocrinologists, and primary care providers) can play a major role in identifying the safer contraceptive method to abolish the risks of unintended pregnancy and preserve the health status of patients with SCD.


Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 4725-4725
Author(s):  
Nirmish Shah ◽  
Christian Douglas ◽  
Emily Bonnabeau ◽  
Nancy Crego ◽  
Marian Earls ◽  
...  

Abstract Introduction: Sickle cell disease (SCD) is a complex disease for which pain is the hallmark, often results in end-organ failure, and is associated with early death. Primary care providers (PCP's), hematologists, and co-management between PCP's and hematologists are necessary to facilitate optimal patient outcomes. Due to the wide array of sickle cell related complications, multiple specialists are required to manage patients with SCD. We report outpatient visits per provider specialty type and co-management, for persons with SCD enrolled in Medicaid during a 12-month period in North Carolina. Methods: Medicaid claims data from North Carolina for patients with a diagnosis of SCD (ICD 9 CM codes: 282.6x, ICD 10 CM codes: D57.0x, D57.1, D57.2x, D57.4x, D57.8x) and at least one month of enrollment in Medicaid between March 1, 2016 and February 28, 2017 were examined. Outpatient visits were identified by the current procedural terminology (CPT) code listed on the claim. Each outpatient visit was then categorized into a specialty using the descriptions from the Medicare Provider/Supplier to Healthcare Provider Taxonomy document that matched the billing provider code and the rendering provider code listed on the claim. If the billing provider or rendering provider code was either missing or did not link to a description that was informative, then those visits were placed in the "NULL" category to signify they were unidentifiable. The "Other Specialty" category included those specialty visits that were either not historically associated with SCD care (such as infectious disease) or occurred ≤1% of all specialty visits (such as dermatology or rheumatology), and excluding SCD specialists, general nurse practitioner and physician assistant visits. Additionally, each outpatient visit type was reviewed by the team and categorized into three broad categories: PCP (including pediatrician), hematologist (including pediatric hematologists), and non-hematology specialty type. An acute care specialty visit (CPT code) occurred outside the emergency department and was defined as a non-PCP and non-hematologist visit that we were unable to further determine specialty type. A minimum of one PCP and one hematologist visit/patient during the study period was required to meet the definition of co-management. A fourth category of provider type (nurse practitioner or physician's assistant) was added whenever we were unable to determine if the NP or PA provided primary care, hematology, or other specialty care. These visits were not included in calculation of co-management. Descriptive statistics were used to report findings. Results: 2850 patients [58% female, mean (SD) age - 23 (16)] were included in the cohort. Eighty-six percent of the sample was enrolled in Medicaid for a minimum of 10 months. Table 1 reports the number of visits, and visits/patient for each category of provider type. Patients had 2.96 (SD 3.76) PCP visits per patient and only 1.28 (SD 2.49) hematology visits per patient. Although there were a large number of PCP and hematology visits overall, only 34% of the cohort met the definition for being co-managed. Table 2 reports the wide array of non-hematology specialty visits by type. On average, patients had nearly the same number of non-hematology specialty provider visits than PCP visits. Conclusions: Persons with SCD in NC had low rates of co-management and used outpatient services from a wide array of specialty providers. Importantly, hematologists had lower than expected outpatient visits and patients had a significant number of acute care outpatient visits. Navigating the large number of providers and specialists requires careful evaluation of our current model of care for treating SCD. Further efforts are required to increase co-management among complex chronic diseases such as SCD. Disclosures Shah: Novartis: Research Funding, Speakers Bureau. Tanabe:NIH and AHRQ: Research Funding; Alliant Health: Consultancy; Duke University: Employment.


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