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AHRQ Research Studies Date
Topics
- Children/Adolescents (6)
- Chronic Conditions (5)
- Clinician-Patient Communication (1)
- Communication (1)
- Decision Making (2)
- Depression (1)
- Education (1)
- Education: Continuing Medical Education (1)
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- Provider: Clinician (1)
- Provider: Health Personnel (1)
- Provider: Physician (1)
- Rural Health (1)
- Screening (1)
- (-) Sickle Cell Disease (13)
- Social Determinants of Health (1)
- Telehealth (1)
- Tools & Toolkits (1)
- Transplantation (1)
- Urban Health (1)
- Vulnerable Populations (1)
AHRQ Research Studies
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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 13 of 13 Research Studies DisplayedIbemere SO, Tanabe P, Bonnabeau E
Awareness and use of the sickle cell disease toolbox by primary care providers in North Carolina.
The authors developed a decision support tool for sickle cell disease (SCD) for SCD management (SCD Toolbox) based on the National Heart, Lung, and Blood Institute's SCD guidelines. Using data from primary care providers (PCPs) in North Carolina, they found that PCPs rarely co-managed with a specialist, had low awareness and use of the SCD Toolbox, and requested multiple formats for the toolbox.
AHRQ-funded; HS024501.
Citation: Ibemere SO, Tanabe P, Bonnabeau E .
Awareness and use of the sickle cell disease toolbox by primary care providers in North Carolina.
J Prim Care Community Health 2021 Jan-Dec;12:21501327211049050. doi: 10.1177/21501327211049050..
Keywords: Sickle Cell Disease, Primary Care, Chronic Conditions, Decision Making, Evidence-Based Practice
Jacob SA, Carroll AE, Bennett WE
A feasibility study of telemedicine for paediatric sickle cell patients living in a rural medically underserved area.
The purpose of this cross-sectional, observational study was to determine the feasibility of using telemedicine for the provision of subspecialty pediatric (0-21 years old) Sickle Cell Disease care in a rural medically underserved area. METHODS: This was a cross-sectional, observational, feasibility study. The study found that 10 SCD patients initiated telemedicine visits during the study period. Approximately 60% of the eligible participants did not attend more than 50% of scheduled visits prior to beginning telemedicine visits or were lost to follow-up. After initiation of telemedicine, all Hb SS patients were started and/or maintained on hydroxyurea. Nine out of 10 patients who participated during this timeframe had a 100% follow-up rate. All the participants rated the comfort and ease of using the telehealth system as good or excellent, and all participants would take part in a telemedicine visit again.
AHRQ-funded; HS026390.
Citation: Jacob SA, Carroll AE, Bennett WE .
A feasibility study of telemedicine for paediatric sickle cell patients living in a rural medically underserved area.
J Telemed Telecare 2021 Aug;27(7):431-35. doi: 10.1177/1357633x19883558..
Keywords: Children/Adolescents, Telehealth, Sickle Cell Disease, Rural Health, Chronic Conditions, Vulnerable Populations, Health Information Technology (HIT)
Morrone KA, Manwani D, Cabana MD
Efficient clinical counseling for sickle cell disease.
Sickle cell anemia (SCA) is a chronic illness that requires frequent health care visits for preventative management. Aims of this overview were to review challenges faced in outpatient subspecialty medicine and describe evidence-based techniques for more effective communication for patients with sickle cell anemia.
AHRQ-funded; HS025297.
Citation: Morrone KA, Manwani D, Cabana MD .
Efficient clinical counseling for sickle cell disease.
J Natl Med Assoc 2021 Aug;113(4):382-87. doi: 10.1016/j.jnma.2021.01.006..
Keywords: Sickle Cell Disease, Chronic Conditions, Clinician-Patient Communication, Communication, Patient Adherence/Compliance
Schulz GL, Kelly KP, Holtmann M
Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease.
Patients with sickle cell disease (SCD) face unpredictable disease, with stem cell transplant being a curative treatment option with risks. The aim of this study was to describe the level and source of decisional conflict in families of children/adolescents with SCD facing a transplant decision. The investigators concluded that varying levels and sources of decisional conflict existed in pediatric patients with SCD and their families considering transplant.
AHRQ-funded; HS022140.
Citation: Schulz GL, Kelly KP, Holtmann M .
Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease.
Patient Educ Couns 2021 May;104(5):1086-93. doi: 10.1016/j.pec.2020.10.011..
Keywords: Children/Adolescents, Sickle Cell Disease, Chronic Conditions, Transplantation, Decision Making
Tanabe P, Blewer AL, Bonnabeau E
Dissemination of evidence-based recommendations for sickle cell disease to primary care and emergency department providers in North Carolina: a cost benefit analysis.
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. Many providers do not feel prepared to care for individuals with SCD, despite the existence of evidence-based guidelines. The authors report the development of a SCD toolbox and the dissemination process to primary care and emergency department (ED) providers in North Carolina (NC). They report the effect of this dissemination on health-care utilization, cost of care, and overall cost-benefit.
AHRQ-funded; HS024501.
Citation: Tanabe P, Blewer AL, Bonnabeau E .
Dissemination of evidence-based recommendations for sickle cell disease to primary care and emergency department providers in North Carolina: a cost benefit analysis.
J Health Econ Outcomes Res 2021 Apr 1;8(1):18-28. doi: 10.36469/jheor.2021.21535..
Keywords: Sickle Cell Disease, Evidence-Based Practice, Guidelines, Primary Care, Emergency Department, Tools & Toolkits
Loo S, Brochier A, Wexler MG
Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.
The purpose of this study was to assess pediatric hematology clinic staff's perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease. Six focus groups were held at urban pediatric hematology clinics in the Northeastern region of the U.S. Four themes emerged: families of children with SCD have numerous unmet basic needs; clinic staff felt they had a role to play in addressing these needs; staff felt their ability to address these needs depended upon caregivers' capacity to act on staff recommendations; clinic staff's ability to address these needs was limited by organizational and systemic factors beyond their control. These findings have important implications for how best to address adverse social determinants of health for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families.
AHRQ-funded; HS022242.
Citation: Loo S, Brochier A, Wexler MG .
Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives.
BMC Health Serv Res 2021 Jan 12;21(1):55. doi: 10.1186/s12913-020-06055-y..
Keywords: Children/Adolescents, Sickle Cell Disease, Chronic Conditions, Social Determinants of Health, Provider: Clinician, Provider: Physician, Provider, Urban Health
Hinton CF, Homer CJ, Thompson AA
AHRQ Author: Dougherty D
A framework for assessing outcomes from newborn screening: on the road to measuring its promise.
The researchers proposed a framework for assessing outcomes for the health and well-being of children identified through newborn screening programs. As an example, they applied the framework to sickle cell disease and phenylketonuria, two diverse conditions with different outcome measures and potential sources of data. They concluded that their paper presented a customizable outcomes framework for organizing measures for newborn screening condition-specific health outcomes, and an approach to identifying sources and challenges to populating those measures.
AHRQ-authored.
Citation: Hinton CF, Homer CJ, Thompson AA .
A framework for assessing outcomes from newborn screening: on the road to measuring its promise.
Mol Genet Metab 2016 Aug;118(4):221-9. doi: 10.1016/j.ymgme.2016.05.017.
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Keywords: Children/Adolescents, Health Status, Newborns/Infants, Screening, Sickle Cell Disease
Jonassaint CR, Jones VL, Leong S
A systematic review of the association between depression and health care utilization in children and adults with sickle cell disease.
The authors sought to determine whether depression or depressive symptoms are associated with health care utilization among children and adults with sickle cell disease (SCD). They found that, overall, depressive symptoms are common in SCD and may increase risk for poor outcomes including health care utilization. They further found a modest association between depression and health care utilization in SCD.
AHRQ-funded; HS022989.
Citation: Jonassaint CR, Jones VL, Leong S .
A systematic review of the association between depression and health care utilization in children and adults with sickle cell disease.
Br J Haematol 2016 Jul;174(1):136-47. doi: 10.1111/bjh.14023.
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Keywords: Children/Adolescents, Depression, Healthcare Utilization, Patient-Centered Healthcare, Sickle Cell Disease
Crawford RD, Jonassaint CR
Adults with sickle cell disease may perform cognitive tests as well as controls when processing speed is taken into account: a preliminary case-control study.
The authors aimed to: (1) evaluate cognitive function among adults with sickle cell disease using a computer-administered neuropsychological test; and (2) replicate previously identified differences in processing speed between patients with sickle cell disease and controls.They replicated previous findings showing a greater than 10-point deficit in processing speed among patients with sickle cell disease. However, when differences in processing speed are taken into account, patients perform equally well or better than controls on cognitive tasks.
AHRQ-funded; HS022989.
Citation: Crawford RD, Jonassaint CR .
Adults with sickle cell disease may perform cognitive tests as well as controls when processing speed is taken into account: a preliminary case-control study.
J Adv Nurs 2016 Jun;72(6):1409-16. doi: 10.1111/jan.12755.
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Keywords: Neurological Disorders, Sickle Cell Disease
Jonassaint CR, Beach MC, Haythornthwaite JA
The association between educational attainment and patterns of emergency department utilization among adults with sickle cell disease.
The authors aimed to determine what factors are related to emergency department visits in hopes of guiding treatments and early interventions. They concluded that early interventions addressing disparities in academic performance, especially for those children most at risk, may lead to improved long-term health outcomes in this population.
AHRQ-funded; HS022989.
Citation: Jonassaint CR, Beach MC, Haythornthwaite JA .
The association between educational attainment and patterns of emergency department utilization among adults with sickle cell disease.
Int J Behav Med 2016 Jun;23(3):300-09. doi: 10.1007/s12529-016-9538-y.
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Keywords: Education, Emergency Department, Healthcare Utilization, Pain, Sickle Cell Disease
Kayle M, Brennan-Cook J, Carter BM
Evaluation of a sickle cell disease educational website for emergency providers.
Electronic surveys were used to conduct a formal evaluation of the accuracy and relevance of the website's content, as well as the effectiveness of the education modules in improving knowledge among health care providers. Both sickle cell disease experts and ED providers agreed that the module content was clear and easy to understand, accurate, comprehensive, relevant, and met module objectives.
AHRQ-funded; HS019646.
Citation: Kayle M, Brennan-Cook J, Carter BM .
Evaluation of a sickle cell disease educational website for emergency providers.
Adv Emerg Nurs J 2016 Apr-Jun;38(2):123-32. doi: 10.1097/tme.0000000000000099.
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Keywords: Education: Continuing Medical Education, Emergency Department, Health Information Technology (HIT), Provider, Sickle Cell Disease
Friermuth CE, Haywood C, Jr., Silva S
Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers.
The authors aimed to validate a survey that measures attitudes toward sickle cell disease (SCD) patients among emergency department (ED) providers and to compare differences in attitude scores between provider types. They found that, among ED providers, this scale identified a dimension not observed in research with the original instrument among internal medicine providers. They concluded that provider attitudes influence patient-provider interactions and quality of care.
AHRQ-funded; HS019646.
Citation: Friermuth CE, Haywood C, Jr., Silva S .
Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers.
Adv Emerg Nurs J 2014 Oct-Dec;36(4):335-47. doi: 10.1097/tme.0000000000000036.
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Keywords: Emergency Department, Emergency Medical Services (EMS), Provider: Health Personnel, Sickle Cell Disease
Reeves S, Garcia E, Kleyn M
Identifying sickle cell disease cases using administrative claims.
The authors developed and tested the accuracy of administrative claims method for identifying children with sickle cell disease (SCD) to enable quality of care assessments among children enrolled in Medicaid. They found that their definition can be used to facilitate a more accurate identification of children with SCD in future studies.
AHRQ-funded; HS020516.
Citation: Reeves S, Garcia E, Kleyn M .
Identifying sickle cell disease cases using administrative claims.
Acad Pediatr 2014 Sep-Oct;14(5 Suppl):S61-7. doi: 10.1016/j.acap.2014.02.008.
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Keywords: Children/Adolescents, Health Insurance, Medicaid, Sickle Cell Disease