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AHRQ Research Studies Date
Topics
- Children/Adolescents (2)
- (-) Chronic Conditions (5)
- Evidence-Based Practice (1)
- Healthcare Delivery (1)
- Health Information Technology (HIT) (2)
- Pain (3)
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- (-) Sickle Cell Disease (5)
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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 5 of 5 Research Studies DisplayedReeves SL, Peng HK, Wing JJJ
Changes in hydroxyurea use among youths enrolled in Medicaid with sickle cell anemia after 2014 revision of clinical guidelines.
The objective of this cross-sectional study was to describe changes in hydroxyurea use among youths with sickle cell anemia (SCA) before and after the release of the 2014 National Heart, Lung, and Blood Institute guidelines. Data was taken from Michigan and New York State Medicaid programs, 2010-18, and the study population included youths aged 1 to 17 with SCA. The findings suggest that hydroxyurea was substantially underused in spite of its establishment as the primary disease-modifying therapy for SCA, and that there was incomplete clinician or patient uptake of the new guidelines. The authors conclude that increased use of hydroxyurea may require a multifaceted approach that includes addressing multiple system- and patient-level barriers.
AHRQ-funded; HS027785.
Citation: Reeves SL, Peng HK, Wing JJJ .
Changes in hydroxyurea use among youths enrolled in Medicaid with sickle cell anemia after 2014 revision of clinical guidelines.
JAMA Netw Open 2023 Mar;6(3):e234584. doi: 10.1001/jamanetworkopen.2023.4584.
Keywords: Children/Adolescents, Sickle Cell Disease, Chronic Conditions, Evidence-Based Practice
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