National Healthcare Quality and Disparities Report
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AHRQ Research Studies Date
Topics
- (-) Children/Adolescents (9)
- Chronic Conditions (4)
- Decision Making (1)
- Depression (1)
- Diagnostic Safety and Quality (1)
- Emergency Department (1)
- Healthcare Delivery (1)
- Healthcare Utilization (2)
- Health Information Technology (HIT) (1)
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- Newborns/Infants (1)
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- Provider: Clinician (1)
- Provider: Physician (1)
- Rural Health (1)
- Screening (1)
- (-) Sickle Cell Disease (9)
- Social Determinants of Health (1)
- Telehealth (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 9 of 9 Research Studies DisplayedJacob 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)
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
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
Jacob SA, Mueller EL, Cochrane AR
Variation in hospital admission of sickle cell patients from the emergency department using the pediatric health information system.
Investigators sought to determine the variation seen in hospitalizations for the top complaints for ED visits for children with sickle cell disease (SCD) nationally. Using data from the Pediatric Health Information Systems (PHIS) Database, they found that pain and fever were the most common primary diagnoses for children with SCD who seek acute care; while significant variation in hospitalization exists, it is not associated with day of the week. They recommend further studies to elucidate patient- and hospital-level factors that influence admission variation.
AHRQ-funded; HS026390.
Citation: Jacob SA, Mueller EL, Cochrane AR .
Variation in hospital admission of sickle cell patients from the emergency department using the pediatric health information system.
Pediatr Blood Cancer 2020 Jun;67(6):e28067. Epub ahead of print. doi: 10.1002/pbc.28067..
Keywords: Sickle Cell Disease, Emergency Department, Children/Adolescents, Hospitalization, Hospitals
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
Reeves SL, Madden B, Wu M
Performance of ICD-10-CM diagnosis codes for identifying children with sickle cell anemia.
The purpose of this study was to develop, test, and validate the performance of ICD-10-CM claims-based case definitions for identifying children with sickle cell anemia (SCA). The investigators concluded that children with SCA could be accurately identified in administrative claims using this straightforward case definition. They asserted that this methodology could be used to monitor trends and use of health services after transition to ICD-10-CM.
AHRQ-funded; HS025292.
Citation: Reeves SL, Madden B, Wu M .
Performance of ICD-10-CM diagnosis codes for identifying children with sickle cell anemia.
Health Serv Res 2020 Apr;55(2):310-17. doi: 10.1111/1475-6773.13257..
Keywords: Children/Adolescents, Sickle Cell Disease, Diagnostic Safety and Quality
Crego N, Douglas C, Bonnabeau E
Sickle-cell disease co-management, health care utilization, and hydroxyurea use.
Sickle-cell disease (SCD) causes significant morbidity, premature mortality, and high disease burden, resulting in frequent health care use. Comanagement may improve utilization and patient adherence with treatments such as Hydroxyurea. The purpose of this study was to describe acute-care utilization in Medicaid-enrolled patients with SCD, patient factors associated with comanagement, and adherence to Hydroxyurea. The investigators concluded that comanagement was a factor in predicting HUadherence, but further studies are needed to identify the frequency and components of comanagement needed to increase adherence and reduce acute care utilization.
AHRQ-funded; HS024501.
Citation: Crego N, Douglas C, Bonnabeau E .
Sickle-cell disease co-management, health care utilization, and hydroxyurea use.
J Am Board Fam Med 2020 Jan-Feb;33(1):91-105. doi: 10.3122/jabfm.2020.01.190143..
Keywords: Sickle Cell Disease, Children/Adolescents, Medication, Healthcare Utilization, Patient Adherence/Compliance
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