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AHRQ Research Studies Date
Topics
- Children/Adolescents (4)
- (-) Chronic Conditions (9)
- Clinician-Patient Communication (1)
- Communication (1)
- Evidence-Based Practice (1)
- Healthcare Delivery (1)
- Health Information Technology (HIT) (3)
- Pain (3)
- Patient-Centered Healthcare (1)
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- Provider: Clinician (1)
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- Shared Decision Making (2)
- (-) Sickle Cell Disease (9)
- Social Determinants of Health (1)
- Telehealth (2)
- 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 9 of 9 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
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
Singh SA, Bakshi N, Mahajan P
What is the future of patient-reported outcomes in sickle-cell disease?
Sickle cell disease (SCD) is a complex, chronic disease caused by abnormal polymerization of hemoglobin, which leads to severe pain episodes, fatigue, and end-organ damage. Patient reported outcomes (PROs) have emerged as a critical tool for measuring SCD disease severity and response to treatment. In this study, the authors reviewed the key issues involved when deciding to use a PRO in a clinical trial. They described the most highly recommended generic and disease-specific PRO tools in SCD and discussed the challenges of incorporating them in clinical practice.
AHRQ-funded; HS024953; HS026622.
Citation: Singh SA, Bakshi N, Mahajan P .
What is the future of patient-reported outcomes in sickle-cell disease?
Expert Rev Hematol 2020 Nov;13(11):1165-73. doi: 10.1080/17474086.2020.1830370..
Keywords: Sickle Cell Disease, Pain, Quality of Life, Chronic Conditions, Patient-Centered Healthcare, Patient-Centered Outcomes Research
Bates KE, Davis CS, Reeves SL
Designing a multistakeholder collaboration to improve preventive care for children with sickle cell anemia.
Researchers organized two novel multi-stakeholder design meetings to identify potential interventions to deliver high-quality preventive care for children with sickle cell anemia (SCA). Invitees included patients with SCA, patients’ families, and representatives from pediatric hematology clinics, Medicaid health plans, community organizations, and one state Medicaid program. The researchers found that bridging gaps between stakeholder groups identified many potential interventions to improve SCA preventive care delivery at all levels of the health care system. They concluded that similar multi-stakeholder discussions may be useful for other communities interested in improving preventive care for children with SCA or other chronic pediatric diseases.
AHRQ-funded; HS025292.
Citation: Bates KE, Davis CS, Reeves SL .
Designing a multistakeholder collaboration to improve preventive care for children with sickle cell anemia.
J Pediatr Hematol Oncol 2020 Apr;42(3):e152-e58. doi: 10.1097/mph.0000000000001666..
Keywords: Children/Adolescents, Sickle Cell Disease, Prevention, Chronic Conditions, Healthcare Delivery
Jonassaint CR, Kang C, Abrams DM
Understanding patterns and correlates of daily pain using the Sickle cell disease Mobile Application to Record Symptoms via Technology (SMART).
The authors used a mobile e-diary app to describe day-to-day patterns in sickle cell disease (SCD)-related pain symptoms and to identify the clinical and demographic factors associated with differences in daily pain level among adult patients with SCD. They suggest that future studies of the app would benefit from implementation of strategies to increase engagement. They also conclude that, despite a limited sample size, this study provides strong evidence supporting the use of mobile technology for measuring daily pain and symptoms in SCD.
AHRQ-funded; HS023989.
Citation: Jonassaint CR, Kang C, Abrams DM .
Understanding patterns and correlates of daily pain using the Sickle cell disease Mobile Application to Record Symptoms via Technology (SMART).
Br J Haematol 2018 Oct;183(2):306-08. doi: 10.1111/bjh.14956..
Keywords: Chronic Conditions, Health Information Technology (HIT), Pain, Sickle Cell Disease, Telehealth
Jonassaint CR, Birenboim A, Jorgensen DR
The association of smartphone-based activity space measures with cognitive functioning and pain sickle cell disease.
This letter describes a study which researched the feasibility of using GPS tracking on smartphones to identify sickle cell disease (SCD) patients aged 18-65 at risk for poor outcomes. The data was used to track physical mobility and activity spaces. Preliminary findings showed that 90% of the phones produced reliable and only 4 phones produced no data. Patients with lower hemoglobin (Hb) levels did have smaller activity spaces.
AHRQ-funded; HS022989.
Citation: Jonassaint CR, Birenboim A, Jorgensen DR .
The association of smartphone-based activity space measures with cognitive functioning and pain sickle cell disease.
Br J Haematol 2018 May;181(3):395-97. doi: 10.1111/bjh.14598..
Keywords: Chronic Conditions, Health Information Technology (HIT), Pain, Sickle Cell Disease