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Search All Research Studies
AHRQ Research Studies Date
Topics
- Caregiving (1)
- (-) Children/Adolescents (4)
- Chronic Conditions (1)
- Decision Making (1)
- Depression (1)
- Education: Patient and Caregiver (1)
- Healthcare Utilization (1)
- Health Status (1)
- Medication (1)
- Newborns/Infants (1)
- Patient-Centered Healthcare (3)
- Patient-Centered Outcomes Research (1)
- Screening (1)
- (-) Sickle Cell Disease (4)
- Transitions of Care (1)
- Young Adults (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 4 of 4 Research Studies DisplayedKayle 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, Decision Making, Education: Patient and Caregiver, Medication, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Sickle Cell Disease
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