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  • 1
    In: Blood, American Society of Hematology, Vol. 128, No. 22 ( 2016-12-02), p. 5923-5923
    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.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
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    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2016
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
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  • 2
    Online Resource
    Online Resource
    American Society of Hematology ; 2018
    In:  Blood Vol. 132, No. Supplement 1 ( 2018-11-29), p. 5812-5812
    In: Blood, American Society of Hematology, Vol. 132, No. Supplement 1 ( 2018-11-29), p. 5812-5812
    Abstract: Background and Objectives: Sickle cell disease is a severe inherited form of anemia caused by a genetic mutation. Polymerization of hemoglobin leads to a cascade of effects decreasing blood flow. This causes tissue hypoxia leading to acute and chronic damage to the organs and endothelial lining. This disease requires complex management that relies on comprehensive training and knowledge regarding the disease process. Often accurate knowledge of sickle cell disease and how to provide appropriate care in the general medical population is limited. The purpose of this project was to develop a sickle cell educational training module for medical professionals. Such a module could be used to guide the provision of accurate education regarding sickle cell disease and best practice when caring for this patient population. Methods: Goals and learning objectives were created and current medical literature about caring for sickle cell disease was reviewed. A comprehensive PowerPoint presentation was produced along with a provider tip sheet and a pre and posttest. The presentation, tip sheet, and tests were reviewed by a board certified pediatric hematologist/oncologist along with the hospital's educational review committee in the Department of Professional Regulation. Once approved, the PowerPoint, tip sheet, and tests were combined into a learning module and uploaded onto an online learning system utilized by the hospital system. The module was sent to over 2,400 outpatient providers and staff and to all inpatient staff on units where sickle cell patients stay when admitted. The module consisted of the participant completing a 10 question pretest, then reviewing the PowerPoint presentation and tip sheet. Following the review of the PowerPoint and tip sheet, the participant completed a 10 question posttest and completed an evaluation of the module. Analysis: There were 223 people who completed the Sickle Cell Disease Learning Module. A paired t-test was conducted to compare pre-test scores to post-test scores. There was a significant difference in the pre-test scores (M = 5.98, SD = 1.66) and post-test scores (M = 9.17, SD = 1.36); p = 〈 0.0001. Conclusion: The goal of this module was to increase baseline medical knowledge of sickle cell disease. The results indicate there was statistically significant improvement in baseline knowledge, based on pre and post data (p = 〈 0.0001). While the results indicate statistically significant increases in performance, it would be important to see if improvements are sustained over time. Reassessment of participants one year after completion of module can be beneficial to see if learned knowledge has been retained. Disclosures No relevant conflicts of interest to declare.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2018
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
    Library Location Call Number Volume/Issue/Year Availability
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  • 3
    Online Resource
    Online Resource
    American Society of Hematology ; 2019
    In:  Blood Vol. 134, No. Supplement_1 ( 2019-11-13), p. 1032-1032
    In: Blood, American Society of Hematology, Vol. 134, No. Supplement_1 ( 2019-11-13), p. 1032-1032
    Abstract: BACKGROUND: In sickle cell disease (SCD), preventing all pain crises or other serious complications is not possible. When consistently followed by a health provider, some complications are avoidable. Patients lose vital opportunities for health monitoring/education when appointments are missed, increasing risk of hospitalization or mortality. Forgetfulness, disease risk/symptom severity perception, transportation, long clinic wait times, scheduling and work/school commitments are examples of factors keeping patients from appointments. An understanding of relevant benefits of and barriers to appointment keeping is essential to overcoming the barriers and promoting the benefits. Appointment keeping behaviors are multi-dimensional and often related to many of the social determinants of health. The Health Belief Model (HBM) is a theoretical framework previously used to investigate appointment keeping. Exploring an individual's general health motivations, perceived disease risks and the role of specific behaviors to reduce risks can be informative in this context. OBJECTIVE: The purpose of this research was to explore how health beliefs affect the appointment keeping behavior of pediatric SCD patients and caregivers at a hospital-based outpatient clinic in central Illinois. METHODS: A 53 question multiple-choice questionnaire was utilized to assess health beliefs. This modified version of a validated HBM questionnaire was changed with permission from the creator (Mirotznik et al., 1998) to better represent the symptoms/complications of SCD. Questions determined participants' general health motivation (GHM), perceived susceptibility to the complications of SCD (PSC), perceived severity of SCD (PS), perceived benefits of doctor visits (PB), perceived costs of doctor visits (PC) (i.e. finding transportation, the energy or time to keep visit, wait at clinic, having blood drawn, talking multiple people at one visit, etc.) and intent to keep doctor appointments (INT). The Cronbach alpha coefficient was .87, suggesting good internal consistency reliability. Participants were recruited through convenience sampling at scheduled clinic appointments. A chart review measured overall appointment keeping. RESULTS: In total, 32 individuals (caregiver or patient ≥14 years) completed the questionnaire. There was a significant difference in 'no show' appointment rates for males versus females (Mean= 5.4% 'no show' rate for males vs Mean=17.6% for females, p=.008, two-tailed t-test). There was not a significant difference in 'no show' rates based on the gender of the child ( 〈 14 years), participant's city of residence or child's SCD type. There was a small, positive correlation between the age of the child and 'no show' rate (r =.175), but it was not statistically significant. There were statistically significant correlations between INT and GHM (r =.523), PC (r = -.584), and 'no show' rates (r = -.426). PSC had statistically significant correlations with PS (r =.670), PB (r = -.370), and PC (r = .378). PB had a statistically significant correlation with PC (r = -.370). A regression analysis for INT with GHM, PSC, PS, PB and PC as variables explained 66.8% of the variance in intent. Of all the variables, PC made the largest unique contribution (beta = -.69). PS and GHM also made statistically significant contributions (beta = -.35 and .25, respectively). CONCLUSIONS: Three HBM dimensions were uniquely associated with INT. GHM was positively associated, PS negatively associated and PC negatively associated. Participants' PSC and PS play an important role in the perception of the benefits and costs to appointment attendance. Future work to improve appointment keeping will require a larger focus on minimizing costs of doctor visits. Furthermore, effectively enhancing GHM could also improve attendance, potentially lessening the disease process and improving overall wellness. PS negatively correlates with INT. Although counterintuitive, these findings are congruent with those found in lupus patients by Mirotznik et al. Patients with higher PS may have acute medical visits more often, leaving them unable to attend additional scheduled preventative visits because of the costs. Additionally, if some preventative care tasks are added to acute visits when appropriate (as in our institution), the patients/caregivers may see less benefit in attending the next scheduled comprehensive visit. Table Disclosures No relevant conflicts of interest to declare.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
    RVK:
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    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2019
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
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  • 4
    In: Blood, American Society of Hematology, Vol. 136, No. Supplement 1 ( 2020-11-5), p. 26-27
    Abstract: Background: Sickle cell disease (SCD) is a genetic disorder that causes significant medical and neurologic morbidity in children. Hydroxyurea (HU) is the primary medication used to prevent these complications. National Heart, Lung, and Blood Institute (NHLBI) guidelines recommend offering HU to children as young as 9 months of age with SCD (HbSS or HbSB0 thalassemia) using a shared decision-making approach. Although HU has proven efficacious it remains underutilized and caregivers report that they are not always actively involved in the decision to initiate this therapy. Reasons for limited HU uptake likely include lack of clinician knowledge and training and negative caregiver perceptions. Thus, we developed the Engage-HU trial as a novel approach to address HU utilization barriers. A critical consideration for this trial was that SCD primarily affects individuals of African and Hispanic/Latino descent. In these minority populations, intervention trials are sometimes terminated early because of recruitment difficulties related to mistrust of research, caregiver burden, and transportation issues. As such, the Engage-HU trial design included best-practice strategies for recruiting people of color in research. This study describes these strategies, the initial recruitment plan, preliminary recruitment outcomes and strategies, and our procedural adaptations. Study Design and Methods: Engage-HU is a randomized control trial (NCT03442114) to assess how clinicians can engage caregivers in a shared discussion that considers their values and preferences and includes evidence that supports HU. Engage-HU compares two dissemination methods for clinicians to facilitate shared decision-making with caregivers of young children with SCD: 1) the American Society of Hematology Pocket Guide, and 2) the HU Shared-Decision Making (H-SDM) Toolkit. The study aims to recruit 174 caregivers and evaluate the effectiveness of the dissemination methods on patient-centered outcomes (caregiver confidence in decision-making and perceptions of experiencing shared decision-making) as well as HU uptake and child health outcomes. Eligible children are aged 0 to 5 years, candidates for HU, and their caregiver has not made a decision about HU in the past 3 months. The trial is being conducted at 9 sites in the United States and uses a stepped-wedge design. Data will be analyzed based on the intent-to-treat principle. All participants will remain in the arm of the study to which they were randomized, regardless of whether or not they receive the assigned dissemination method. The primary endpoints are caregiver decisional uncertainty and caregiver perception of shared decision-making measured using validated tools. Data will be analyzed using a linear mixed effects regression model with a robust variance estimator and maximum likelihood estimation with observations clustered within site. The Engage-HU trial includes adaptations to increase recruitment such as tailored messaging, a relational recruitment approach, streamlined data collection, and a Stakeholder Advisory Committee. However, even with these adaptations, the first 6-months of the trial yielded lower than anticipated recruitment. Rather than terminate the trial or accept low enrollment, the research team implemented a series of recruitment strategies to address barriers including helping to improve research coordinator knowledge of the study purpose and adjusting no-show and follow-up procedures (e.g., calls to families after missed appointments and reminder calls before appointments). Site clinicians and clinic staff were provided with additional training so they could give more context about Engage-HU to caregivers and the study principal investigator led monthly "all coordinator" calls to provide support by sharing updates and experiences about successful recruitment. Implementation of these strategies resulted in triple the number of enrollments over the next 7-months compared to the previous 6-months (Table 1). Our goal in sharing this information is to provide lessons learned that can be implemented in future trials with the systematically underserved SCD population. It is also anticipated that methods described here may also inform clinical approaches to better engage caregivers of young children around critical clinical conversations, such as initiating medications like HU. Disclosures King: Magenta Therapeutics: Membership on an entity's Board of Directors or advisory committees; Bioline: Consultancy; RiverVest: Consultancy; Novimmune: Research Funding; Celgene: Consultancy; Tioma Therapuetics: Consultancy; Amphivena Therapeutics: Research Funding; WUGEN: Current equity holder in private company; Cell Works: Consultancy; Incyte: Consultancy. Smith-Whitley:Prime: Other: Education material; Celgene: Membership on an entity's Board of Directors or advisory committees; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees; Novartis: Membership on an entity's Board of Directors or advisory committees. Neumayr:Emmaus: Consultancy; Bayer: Consultancy; CTD Holdings: Consultancy; Pfizer: Consultancy; ApoPharma: Consultancy, Membership on an entity's Board of Directors or advisory committees; Micelle: Other: Site principal investigator; GBT: Other: Site principal investigator; PCORI: Other: site principal investigator; Novartis: Other: co-investigator; Bluebird Bio: Other: co-investigator; Sangamo Therapeutics: Other; Silarus: Other; Celgene: Other; La Jolla Pharmaceuticals: Other; Forma: Other; Imara: Other; National Heart, Lung, and Blood Institute: Other; Health Resources and Services Administration: Other; Centers for Disease Control and Prevention: Other; Seattle Children's Research: Other. Yates:Novartis: Research Funding. Thompson:Novartis: Consultancy, Honoraria, Research Funding; CRISPR/Vertex: Research Funding; BMS: Consultancy, Research Funding; Baxalta: Research Funding; Biomarin: Research Funding; bluebird bio, Inc.: Consultancy, Research Funding.
    Type of Medium: Online Resource
    ISSN: 0006-4971 , 1528-0020
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Hematology
    Publication Date: 2020
    detail.hit.zdb_id: 1468538-3
    detail.hit.zdb_id: 80069-7
    Library Location Call Number Volume/Issue/Year Availability
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