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Search All Research Studies
Topics
- Caregiving (1)
- Children/Adolescents (3)
- Chronic Conditions (3)
- (-) Decision Making (4)
- Education: Patient and Caregiver (2)
- Evidence-Based Practice (1)
- Medication (1)
- Patient-Centered Healthcare (1)
- Patient-Centered Outcomes Research (1)
- Patient and Family Engagement (1)
- Primary Care (1)
- (-) Sickle Cell Disease (4)
- Transplantation (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 DisplayedIbemere SO, Tanabe P, Bonnabeau E
Awareness and use of the sickle cell disease toolbox by primary care providers in North Carolina.
The authors developed a decision support tool for sickle cell disease (SCD) for SCD management (SCD Toolbox) based on the National Heart, Lung, and Blood Institute's SCD guidelines. Using data from primary care providers (PCPs) in North Carolina, they found that PCPs rarely co-managed with a specialist, had low awareness and use of the SCD Toolbox, and requested multiple formats for the toolbox.
AHRQ-funded; HS024501.
Citation: Ibemere SO, Tanabe P, Bonnabeau E .
Awareness and use of the sickle cell disease toolbox by primary care providers in North Carolina.
J Prim Care Community Health 2021 Jan-Dec;12:21501327211049050. doi: 10.1177/21501327211049050..
Keywords: Sickle Cell Disease, Primary Care, Chronic Conditions, Decision Making, Evidence-Based Practice
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
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
Crosby LE, Shook LM, Ware RE
Shared decision making for hydroxyurea treatment initiation in children with sickle cell anemia.
While decision aids and tools are being developed, the authors recommended six strategies providers can use to facilitate discussions concerning the NHLBI clinical guidelines to recommend hydroxyurea for young patients with sickle cell anemia.
AHRQ-funded; HS021114.
Citation: Crosby LE, Shook LM, Ware RE .
Shared decision making for hydroxyurea treatment initiation in children with sickle cell anemia.
Pediatr Blood Cancer 2015 Feb;62(2):184-85. doi: 10.1002/pbc.25124.
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Keywords: Children/Adolescents, Decision Making, Education: Patient and Caregiver, Patient and Family Engagement, Sickle Cell Disease