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AHRQ Research Studies Date
Topics
- Caregiving (1)
- Children/Adolescents (5)
- Chronic Conditions (7)
- Clinician-Patient Communication (1)
- Communication (1)
- Diabetes (1)
- Education: Patient and Caregiver (1)
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- Shared Decision Making (3)
- (-) Sickle Cell Disease (10)
- Social Determinants of Health (1)
- Telehealth (1)
- Tools & Toolkits (1)
- Transitions of Care (1)
- Transplantation (1)
- Urban Health (1)
- Vulnerable Populations (1)
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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 10 of 10 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, Shared 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, Shared 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
Badawy SM, Payne AB
Association between clinical outcomes and metformin use in adults with sickle cell disease and diabetes mellitus.
This study tested the hypothesis that metformin use for treatment of diabetes mellitus is associated with fewer sickle cell disease (SCD) adverse outcomes and lower health care utilization among patients with SCD and diabetes mellitus. This retrospective cohort study used data from MarketScan Medicaid claims for 2006 to 2016. SCD patients who were metformin users and nonusers were compared. Patients on hydroxyurea, insulin, or iron chelation were excluded. Metformin was found to be associated with significantly fewer inpatient and emergency department encounters in adults with SCD and diabetes mellitus.
AHRQ-funded; HS023011.
Citation: Badawy SM, Payne AB .
Association between clinical outcomes and metformin use in adults with sickle cell disease and diabetes mellitus.
Blood Adv 2019 Nov 12;3(21):3297-306. doi: 10.1182/bloodadvances.2019000838..
Keywords: Sickle Cell Disease, Diabetes, Chronic Conditions, Medication, Outcomes, Patient-Centered Outcomes Research
Kayle M, Docherty SL, Sloane R
Transition to adult care in sickle cell disease: a longitudinal study of clinical characteristics and disease severity.
Researchers conducted a longitudinal analysis of medical records of adolescents and young adults (AYAs) with sickle cell disease (SCD) to describe the clinical course among AYAs during transition to adult care. They found that, whereas most AYAs had stable severity, nearly a quarter had increasing severity over time. AYAs with increasing severity had more complications, were more likely to transfer to adult care, and demonstrated higher and longer adult SCD care utilization compared with AYAs with stable severity.
AHRQ-funded; HS023989.
Citation: Kayle M, Docherty SL, Sloane R .
Transition to adult care in sickle cell disease: a longitudinal study of clinical characteristics and disease severity.
Pediatr Blood Cancer 2019 Jan;66(1):e27463. doi: 10.1002/pbc.27463..
Keywords: Children/Adolescents, Patient-Centered Healthcare, Sickle Cell Disease, Transitions of Care, Young Adults
Crosby LE, Walton A, Shook LM
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
This study developed a decision aid for use of hydroxyurea for parents of children with sickle cell anemia. There are national evidence-based guidelines, but they do not offer strategies for implementation. A multicomponent decision aid was developed via a needs assessment, clinic observations and iterative feedback. The decision aid was considered useful by the 75 parents and 28 clinicians who participated in all phases of the study.
AHRQ-funded; HS021114.
Citation: Crosby LE, Walton A, Shook LM .
Development of a hydroxyurea decision aid for parents of children with sickle cell anemia.
J Pediatr Hematol Oncol 2019 Jan;41(1):56-63. doi: 10.1097/mph.0000000000001257..
Keywords: Caregiving, Children/Adolescents, Chronic Conditions, Shared Decision Making, Education: Patient and Caregiver, Medication, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Sickle Cell Disease
Knight LMJ, Onsomu EO, Bosworth HB
Exploring emergency department provider experiences with and perceptions of weight-based versus individualized vaso-occlusive treatment protocols in sickle cell disease.
This study compared perceptions of nurses and physicians on protocols to treat sickle cell disease vaso-occlusive episodes (VOEs) in emergency rooms (ERs). Two different protocols were used for VOEs: weight –based and individualized vaso-occlusive. Nurses were less satisfied with clarity of the protocols than physicians. Pain management protocol perceptions differed widely between physicians, residents, physician assistants, nurse practitioners and nurses.
AHRQ-funded; HS024501.
Citation: Knight LMJ, Onsomu EO, Bosworth HB .
Exploring emergency department provider experiences with and perceptions of weight-based versus individualized vaso-occlusive treatment protocols in sickle cell disease.
Adv Emerg Nurs J 2019 Jan/Mar;41(1):86-97. doi: 10.1097/tme.0000000000000232..
Keywords: Emergency Department, Medication, Opioids, Pain, Provider, Sickle Cell Disease