National Healthcare Quality and Disparities Report
Latest available findings on quality of and access to health care
Data
- Data Infographics
- Data Visualizations
- Data Tools
- Data Innovations
- All-Payer Claims Database
- Healthcare Cost and Utilization Project (HCUP)
- Medical Expenditure Panel Survey (MEPS)
- AHRQ Quality Indicator Tools for Data Analytics
- State Snapshots
- United States Health Information Knowledgebase (USHIK)
- Data Sources Available from AHRQ
Search All Research Studies
AHRQ Research Studies Date
AHRQ Research Studies
Sign up: AHRQ Research Studies Email updates
Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
Results
1 to 3 of 3 Research Studies DisplayedSingh 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
Brennan-Cook J, Bonnabeau E, Aponte R
Barriers to care for persons with sickle cell disease: the case manager's opportunity to improve patient outcomes.
The purpose of this paper was to review the barriers to care for patients with sickle cell disease (SCD). Chronic pain and the perception of addiction, implicit bias, frequent hospitalizations and emergency department visits, clinician and patient knowledge deficits, and SCD stigma all impede the ability to provide evidence-based care for patients with SCD. The authors assert that case managers can coordinate and advocate for appropriate care that improves patient outcomes.
AHRQ-funded; HS024501.
Citation: Brennan-Cook J, Bonnabeau E, Aponte R .
Barriers to care for persons with sickle cell disease: the case manager's opportunity to improve patient outcomes.
Prof Case Manag 2018 Jul/Aug;23(4):213-19. doi: 10.1097/ncm.0000000000000260..
Keywords: Access to Care, Healthcare Delivery, Health Services Research (HSR), Patient-Centered Outcomes Research, Sickle Cell Disease
Badawy SM, Barrera L, Cai S
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Researchers studied the effects of sickle disease (SCD) on the quality of life (QOL) on youths with the disease. Participant characteristics, chronic pain, and medication adherence were measured against clinical outcomes. Older and female participants had worse QOL than males overall.
AHRQ-funded; HS023011.
Citation: Badawy SM, Barrera L, Cai S .
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Biomed Res Int 2018 Jul 18;2018:8296139. doi: 10.1155/2018/8296139..
Keywords: Children/Adolescents, Outcomes, Patient-Centered Outcomes Research, Quality of Life, Sickle Cell Disease