National Healthcare Quality and Disparities Report
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- Access to Care (1)
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- Children/Adolescents (9)
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- Quality of Care (1)
- Quality of Life (1)
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- Shared Decision Making (3)
- (-) Sickle Cell Disease (16)
- Social Determinants of Health (1)
- Telehealth (4)
- 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 16 of 16 Research Studies DisplayedReeves SL, Peng HK, Wing JJJ
Changes in hydroxyurea use among youths enrolled in Medicaid with sickle cell anemia after 2014 revision of clinical guidelines.
The objective of this cross-sectional study was to describe changes in hydroxyurea use among youths with sickle cell anemia (SCA) before and after the release of the 2014 National Heart, Lung, and Blood Institute guidelines. Data was taken from Michigan and New York State Medicaid programs, 2010-18, and the study population included youths aged 1 to 17 with SCA. The findings suggest that hydroxyurea was substantially underused in spite of its establishment as the primary disease-modifying therapy for SCA, and that there was incomplete clinician or patient uptake of the new guidelines. The authors conclude that increased use of hydroxyurea may require a multifaceted approach that includes addressing multiple system- and patient-level barriers.
AHRQ-funded; HS027785.
Citation: Reeves SL, Peng HK, Wing JJJ .
Changes in hydroxyurea use among youths enrolled in Medicaid with sickle cell anemia after 2014 revision of clinical guidelines.
JAMA Netw Open 2023 Mar;6(3):e234584. doi: 10.1001/jamanetworkopen.2023.4584.
Keywords: Children/Adolescents, Sickle Cell Disease, Chronic Conditions, Evidence-Based Practice
Reeves SL, Patel PN, Madden B
Telehealth use before and during the COVID-19 pandemic among children with sickle cell anemia.
This study’s goal was to determine telehealth use before and during the COVID pandemic for children ages 1-17 years old with sickle cell anemia (SCA). The authors identified children with SCA continuously enrolled in Michigan Medicaid from January 2019 to December 2020. The study population consisted of 493 children with SCA with a mean age of 8.7 years at study entry. Pre-pandemic there were 4,367 outpatient visits, with all but 19 in-person. Telehealth visits peaked in April 2020 and then began declining. The majority of telehealth visits were with hematologists, followed up adult subspecialists (27%) and pediatrics/family medicine.
AHRQ-funded; HS027632.
Citation: Reeves SL, Patel PN, Madden B .
Telehealth use before and during the COVID-19 pandemic among children with sickle cell anemia.
Telemed J E Health 2022 Aug;28(8):1166-71. doi: 10.1089/tmj.2021.0132..
Keywords: Children/Adolescents, COVID-19, Telehealth, Health Information Technology (HIT), Sickle Cell Disease, Chronic Conditions, Access to Care
Creary SE, Beeman C, Stanek J
Impact of hydroxyurea dose and adherence on hematologic outcomes for children with sickle cell anemia.
The purpose of this study was to quantify the contributions of hydroxyurea dose and medication adherence to the association between hydroxyurea exposure and hematologic parameters in children with sickle cell anemia (SCA.) Using data from children with SCA who were enrolled in two prospective hydroxyurea adherence studies, the researchers assessed the association by video of directly observed therapy or electronic pill bottle and medication administration record. Forty-five participants were included in the analysis. The study reported that higher exposure was related with higher fetal hemoglobin and mean corpuscular volume. The researchers concluded that higher hydroxyurea dose was related with improved hematologic parameters and is affected by level of prescribed dose and adherence.
AHRQ-funded; HS023011.
Citation: Creary SE, Beeman C, Stanek J .
Impact of hydroxyurea dose and adherence on hematologic outcomes for children with sickle cell anemia.
Pediatr Blood Cancer 2022 Jun;69(6):e29607. doi: 10.1002/pbc.29607..
Keywords: Children/Adolescents, Medication, Sickle Cell Disease, Chronic Conditions, Outcomes, Patient Adherence/Compliance
Reeves SL, Freed GL, Madden B
Trends in quality of care among children with sickle cell anemia.
This study’s goal was to assess trends in the use of antibiotic prophylaxis to prevent serious infections and transcranial Doppler (TCD) screening to identify those at highest risk of overt stroke among children with sickle cell anemia (SCA) using validated quality measures. The authors identified children with SCA who were enrolled in Michigan or New York State (NYS) Medicaid programs from 2011 to 2018. Two outcomes were assessed yearly: (a) filling of ≥300 days of antibiotics, and (b) receipt of greater than or equal to one TCD. A total of 1784 children were eligible for antibiotic prophylaxis (Michigan: 384; NYS: 1400). Annual rates of filling ≥300 days of antibiotics ranged from 16% to 22%, showing similar results by state. There was no change in rates of antibiotic filling over time in Michigan, but there was a decrease in NYS. A total of 3439 children with SCA were eligible for TCD screening (Michigan: 710; NYS: 2729). Annual rates of TCD screening ranged from 39% to 45%, which did not change over time.
AHRQ-funded; HS025292.
Citation: Reeves SL, Freed GL, Madden B .
Trends in quality of care among children with sickle cell anemia.
Pediatr Blood Cancer 2022 Feb; 69(2):e29446. doi: 10.1002/pbc.29446..
Keywords: Children/Adolescents, Sickle Cell Disease, Chronic Conditions, Quality of Care
Ibemere 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, Shared Decision Making, Evidence-Based Practice
Jacob 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)
Morrone KA, Manwani D, Cabana MD
Efficient clinical counseling for sickle cell disease.
Sickle cell anemia (SCA) is a chronic illness that requires frequent health care visits for preventative management. Aims of this overview were to review challenges faced in outpatient subspecialty medicine and describe evidence-based techniques for more effective communication for patients with sickle cell anemia.
AHRQ-funded; HS025297.
Citation: Morrone KA, Manwani D, Cabana MD .
Efficient clinical counseling for sickle cell disease.
J Natl Med Assoc 2021 Aug;113(4):382-87. doi: 10.1016/j.jnma.2021.01.006..
Keywords: Sickle Cell Disease, Chronic Conditions, Clinician-Patient Communication, Communication, Patient Adherence/Compliance
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, Shared 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
Singh 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
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
Badawy SM, Payne AB
Association between clinical outcomes and metformin use in adults with sickle cell disease and diabetes mellitus.
This study tested the hypothesis that metformin use for treatment of diabetes mellitus is associated with fewer sickle cell disease (SCD) adverse outcomes and lower health care utilization among patients with SCD and diabetes mellitus. This retrospective cohort study used data from MarketScan Medicaid claims for 2006 to 2016. SCD patients who were metformin users and nonusers were compared. Patients on hydroxyurea, insulin, or iron chelation were excluded. Metformin was found to be associated with significantly fewer inpatient and emergency department encounters in adults with SCD and diabetes mellitus.
AHRQ-funded; HS023011.
Citation: Badawy SM, Payne AB .
Association between clinical outcomes and metformin use in adults with sickle cell disease and diabetes mellitus.
Blood Adv 2019 Nov 12;3(21):3297-306. doi: 10.1182/bloodadvances.2019000838..
Keywords: Sickle Cell Disease, Diabetes, Chronic Conditions, Medication, Outcomes, Patient-Centered Outcomes Research
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, Shared Decision Making, Education: Patient and Caregiver, Medication, Patient-Centered Healthcare, Patient-Centered Outcomes Research, Sickle Cell Disease
Jonassaint CR, Kang C, Abrams DM
Understanding patterns and correlates of daily pain using the Sickle cell disease Mobile Application to Record Symptoms via Technology (SMART).
The authors used a mobile e-diary app to describe day-to-day patterns in sickle cell disease (SCD)-related pain symptoms and to identify the clinical and demographic factors associated with differences in daily pain level among adult patients with SCD. They suggest that future studies of the app would benefit from implementation of strategies to increase engagement. They also conclude that, despite a limited sample size, this study provides strong evidence supporting the use of mobile technology for measuring daily pain and symptoms in SCD.
AHRQ-funded; HS023989.
Citation: Jonassaint CR, Kang C, Abrams DM .
Understanding patterns and correlates of daily pain using the Sickle cell disease Mobile Application to Record Symptoms via Technology (SMART).
Br J Haematol 2018 Oct;183(2):306-08. doi: 10.1111/bjh.14956..
Keywords: Chronic Conditions, Health Information Technology (HIT), Pain, Sickle Cell Disease, Telehealth
Jonassaint CR, Birenboim A, Jorgensen DR
The association of smartphone-based activity space measures with cognitive functioning and pain sickle cell disease.
This letter describes a study which researched the feasibility of using GPS tracking on smartphones to identify sickle cell disease (SCD) patients aged 18-65 at risk for poor outcomes. The data was used to track physical mobility and activity spaces. Preliminary findings showed that 90% of the phones produced reliable and only 4 phones produced no data. Patients with lower hemoglobin (Hb) levels did have smaller activity spaces.
AHRQ-funded; HS022989.
Citation: Jonassaint CR, Birenboim A, Jorgensen DR .
The association of smartphone-based activity space measures with cognitive functioning and pain sickle cell disease.
Br J Haematol 2018 May;181(3):395-97. doi: 10.1111/bjh.14598..
Keywords: Chronic Conditions, Health Information Technology (HIT), Pain, Sickle Cell Disease
Jonassaint CR, Shah N, Jonassaint J
Usability and feasibility of an mHealth intervention for monitoring and managing pain symptoms in Sickle Cell Disease: The Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART).
This article describes the feasibility of the Sickle cell disease Mobile Application to Record symptoms via Technology (SMART), an mHealth app developed to help sickle cell disease patients monitor and manage their day-to-day symptoms. The researchers concluded that that SMART is a useable and feasible method for monitoring daily pain symptoms among adolescents and adults with sickle cell disease-related pain.
AHRQ-funded; HS022989.
Citation: Jonassaint CR, Shah N, Jonassaint J .
Usability and feasibility of an mHealth intervention for monitoring and managing pain symptoms in Sickle Cell Disease: The Sickle Cell Disease Mobile Application to Record Symptoms via Technology (SMART).
Hemoglobin 2015;39(3):162-8. doi: 10.3109/03630269.2015.1025141..
Keywords: Chronic Conditions, Health Information Technology (HIT), Patient-Centered Outcomes Research, Sickle Cell Disease, Telehealth