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Research Studies is a monthly compilation of research articles funded by AHRQ or authored by AHRQ researchers and recently published in journals or newsletters.
Results1 to 2 of 2 Research Studies Displayed
Kayle 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.
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.
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