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- Access to Care (2)
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- Diagnostic Safety and Quality (1)
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- (-) Sickle Cell Disease (27)
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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 25 of 27 Research Studies DisplayedSingh 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
Hodges JR, Phillips SM, Norell S
Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study.
The objective of this study was to examine barriers to patients' adherence to hydroxyurea-use regimens by using the intentional and unintentional medication nonadherence framework. Individuals with sickle cell disease (SCD) aged 15 to 49.9 years who were participants in the Sickle Cell Disease Implementation Consortium (SCDIC) Needs Assessment were interviewed. Findings showed that participants with SCD more frequently endorsed adherence barriers that fell into the unintentional nonadherence type vs intentional nonadherence type. Results from this study will help SCD health care providers to understand patient choices and decisions as being either unintentional or intentional, to guide tailored clinical discussions regarding hydroxyurea therapy, and to develop specific, more nuanced interventions to address nonadherence factors.
AHRQ-funded; HS023011.
Citation: Hodges JR, Phillips SM, Norell S .
Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study.
Blood Adv 2020 Sep 22;4(18):4463-73. doi: 10.1182/bloodadvances.2020001701..
Keywords: Sickle Cell Disease, Medication, Patient Adherence/Compliance
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
Alberts NM, Badawy SM, Hodges J
Development of the incharge health mobile app to improve adherence to hydroxyurea in patients with sickle cell disease: user-centered design approach.
This study looked at how use of a newly developed mobile app called InCharge Health can help sickle cell disease (SCD) patients adhere to their prescribed medication use of hydroxyurea. Four phases were used to develop the mobile app with substantial input from users and by mapping the Health Belief Model (HBM) as the framework that guided the choice for its components. More than half of the patients reported potentially low health literacy. Preferred patient app features included 7 key components: medication reminders and tracker, disease education, communication, personalization, motivation, support during pain episodes, and social support. This information was translated into features within the app.
AHRQ-funded; HS023011.
Citation: Alberts NM, Badawy SM, Hodges J .
Development of the incharge health mobile app to improve adherence to hydroxyurea in patients with sickle cell disease: user-centered design approach.
JMIR Mhealth Uhealth 2020 May 8;8(5):e14884. doi: 10.2196/14884..
Keywords: Sickle Cell Disease, Health Information Technology (HIT), Patient Adherence/Compliance, Patient Self-Management, Medication
Kayle M, Valle J, Paulukonis S
Impact of Medicaid expansion on access and healthcare among individuals with sickle cell disease.
The purpose of this study was to examine whether Medicaid expansion in California, increased Medicaid enrollment, increased hydroxyurea prescriptions filled, and decreased acute healthcare utilization in sickle cell disease (SCD). Findings showed that Medicaid expansion did not appear to have improved enrollment or acute healthcare utilization among individuals with SCD in California. Recommendations included future studies exploring whether individuals with SCD transitioned to other insurance plans or became uninsured post-expansion, the underlying reasons for low hydroxyurea utilization, and the lack of effect on hospital admissions despite a modest effect on emergency department visits.
AHRQ-funded; HS023011; HS025297.
Citation: Kayle M, Valle J, Paulukonis S .
Impact of Medicaid expansion on access and healthcare among individuals with sickle cell disease.
Pediatr Blood Cancer 2020 May;67(5):e28152. doi: 10.1002/pbc.28152..
Keywords: Sickle Cell Disease, Medicaid, Access to Care, Healthcare Utilization, Medication, Hospitalization, Health Insurance
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
Heslin KC, Owens PL, Simpson LA
AHRQ Author: Heslin KC Owens PL
Annual report on health care for children and youth in the united states: focus on 30-day unplanned inpatient readmissions, 2009 to 2014.
The authors describe trends in unplanned 30-day all-condition hospital readmissions for children aged 1 to 17 years between 2009 and 2014. Using HCUP data, they found that the rate of readmission was essentially stable between 2009 and 2014. In 2009, the most common reason for readmission was sickle cell anemia, whereas in 2014 the most common reason was epilepsy. Pneumonia fell from the second to the sixth most common reason for readmission over this period. The authors suggest that their study provides a baseline assessment for examining trends in 30-day unplanned pediatric readmissions, an important quality metric as the provisions of the Children's Health Insurance Program Reauthorization Act and the Affordable Care Act are changed and implemented in the future.
AHRQ-authored.
Citation: Heslin KC, Owens PL, Simpson LA .
Annual report on health care for children and youth in the united states: focus on 30-day unplanned inpatient readmissions, 2009 to 2014.
Acad Pediatr 2018 Nov - Dec;18(8):857-72. doi: 10.1016/j.acap.2018.06.006..
Keywords: Healthcare Cost and Utilization Project (HCUP), Children/Adolescents, Hospital Readmissions, Hospitalization, Hospitals, Sickle Cell Disease, Pneumonia, Neurological Disorders
Brennan-Cook J, Bonnabeau E, Aponte R
Barriers to care for persons with sickle cell disease: the case manager's opportunity to improve patient outcomes.
The purpose of this paper was to review the barriers to care for patients with sickle cell disease (SCD). Chronic pain and the perception of addiction, implicit bias, frequent hospitalizations and emergency department visits, clinician and patient knowledge deficits, and SCD stigma all impede the ability to provide evidence-based care for patients with SCD. The authors assert that case managers can coordinate and advocate for appropriate care that improves patient outcomes.
AHRQ-funded; HS024501.
Citation: Brennan-Cook J, Bonnabeau E, Aponte R .
Barriers to care for persons with sickle cell disease: the case manager's opportunity to improve patient outcomes.
Prof Case Manag 2018 Jul/Aug;23(4):213-19. doi: 10.1097/ncm.0000000000000260..
Keywords: Access to Care, Healthcare Delivery, Health Services Research (HSR), Patient-Centered Outcomes Research, Sickle Cell Disease
Badawy SM, Payne AB, Rodeghier MJ
Exercise capacity and clinical outcomes in adults followed in the Cooperative Study of Sickle Cell Disease (CSSCD).
The purpose of this study was to determine the factors associated with exercise capacity in adults with sickle cell disease (SCD) and its relationship to hospitalizations and mortality. The investigators asserted that prospective studies are needed to further evaluate the impact of regular exercise and improved fitness on clinical outcomes and mortality in SCD.
AHRQ-funded; HS023011.
Citation: Badawy SM, Payne AB, Rodeghier MJ .
Exercise capacity and clinical outcomes in adults followed in the Cooperative Study of Sickle Cell Disease (CSSCD).
Eur J Haematol 2018 Oct;101(4):532-41. doi: 10.1111/ejh.13140..
Keywords: Sickle Cell Disease, Lifestyle Changes
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
Badawy SM, Thompson AA, Liem RI
Beliefs about hydroxyurea in youth with sickle cell disease.
The objectives of this study were to assess beliefs about hydroxyurea using the Beliefs about Medicines Questionnaire (BMQ), and to examine the relationship of patients' beliefs to their hydroxyurea adherence and health-related quality of life (HRQOL). The investigators found that beliefs about hydroxyurea correlated with HRQOL scores and adherence levels. The authors suggest that addressing patients' concerns about hydroxyurea and medications overall as well as routine assessment of adherence and beliefs could help to overcome adherence barriers.
AHRQ-funded; HS023011.
Citation: Badawy SM, Thompson AA, Liem RI .
Beliefs about hydroxyurea in youth with sickle cell disease.
Hematol Oncol Stem Cell Ther 2018 Sep;11(3):142-48. doi: 10.1016/j.hemonc.2018.01.001..
Keywords: Children/Adolescents, Medication, Patient Adherence/Compliance, Quality of Life, Sickle Cell Disease
Badawy SM, Cronin RM, Hankins J
Patient-centered eHealth Interventions for children, adolescents, and adults with sickle cell disease: systematic review.
In this study, researchers systematically evaluated the most recent evidence in the literature to (1) review the different types of technological tools used for self-management of sickle cell disease, (2) discover and describe what self-management activities these tools were used for, and (3) assess the efficacy of these technologies in self-management. They concluded that despite the promising feasibility and acceptability of eHealth interventions in improving self-management of sickle cell disease, the evidence overall is modest.
AHRQ-funded; HS023011.
Citation: Badawy SM, Cronin RM, Hankins J .
Patient-centered eHealth Interventions for children, adolescents, and adults with sickle cell disease: systematic review.
J Med Internet Res 2018 Jul 19;20(7):e10940. doi: 10.2196/10940..
Keywords: Children/Adolescents, Health Information Technology (HIT), Patient-Centered Healthcare, Sickle Cell Disease, Telehealth
Badawy SM, Barrera L, Cai S
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Researchers studied the effects of sickle disease (SCD) on the quality of life (QOL) on youths with the disease. Participant characteristics, chronic pain, and medication adherence were measured against clinical outcomes. Older and female participants had worse QOL than males overall.
AHRQ-funded; HS023011.
Citation: Badawy SM, Barrera L, Cai S .
Association between participants' characteristics, patient-reported outcomes, and clinical outcomes in youth with sickle cell disease.
Biomed Res Int 2018 Jul 18;2018:8296139. doi: 10.1155/2018/8296139..
Keywords: Children/Adolescents, Outcomes, Patient-Centered Outcomes Research, Quality of Life, Sickle Cell Disease
Williams H, Silva RNS, Cline D
Social and behavioral factors in sickle cell disease: employment predicts decreased health care utilization.
The purpose of this study was to determine the frequency of health care encounters among people with sickle cell disease (SCD) who sought treatment for a vaso-occlusive crisis (VOC). Patients with SCD enrolled in a prospective descriptive study in North Carolina were interviewed concerning their behavioral-social factors. A report of health care encounters was then produced, generated by ICD codes associated with VOCs. Prevalent behavioral and social factors among patients with more frequent encounters were anxiety, depression, illicit drug use, unstable home situations, and unemployment. Employment and stable home situations were significantly associated with a decreased frequency in health care encounters.
AHRQ-funded; HS019646.
Citation: Williams H, Silva RNS, Cline D .
Social and behavioral factors in sickle cell disease: employment predicts decreased health care utilization.
J Health Care Poor Underserved 2018;29(2):814-29. doi: 10.1353/hpu.2018.0060..
Keywords: Healthcare Utilization, Sickle Cell Disease
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
Reeves SL, Tribble AC, Madden B
Antibiotic prophylaxis for children with sickle cell anemia.
This study calculated the proportion of children with sickle cell anemia (SCA) who received at least 300 days of antibiotic prophylaxis against invasive pneumococcal disease and identified predictors of receipt. Children with SCA between 3 months and 5 years old were identified by the presence of three or more Medicaid claims with a diagnosis of SCA within a calendar year in six states. Receipt of antibiotics was identified through claims for filled prescriptions. The authors conclude that antibiotic prophylaxis rates are low among children with SCA; more healthcare encounters may offer opportunities for increased intervention. Potential predictors were identified as age, sex, year, state, and health services usage.
AHRQ-funded; HS020516.
Citation: Reeves SL, Tribble AC, Madden B .
Antibiotic prophylaxis for children with sickle cell anemia.
Pediatrics 2018 Mar;141(3). doi: 10.1542/peds.2017-2182..
Keywords: Sickle Cell Disease, Children/Adolescents, Antibiotics, Prevention, Pneumonia, Medication
Cline DM, Silva S, Freiermuth CE
Emergency department (ED), ED observation, day hospital, and hospital admissions for adults with sickle cell disease.
In the context of a two-institution quality improvement project to implement best practices for management of patients with sickle cell disease (SCD) vaso-occlusive crisis (VOC), researchers prospectively compared acute care encounters for utilization of 1) emergency department (ED); 2) ED observation unit; 3) day hospital, and 4) hospital admission, of two different patient cohorts with SCD. They found that healthcare utilization varied dramatically between individual patients.
AHRQ-funded; HS019646.
Citation: Cline DM, Silva S, Freiermuth CE .
Emergency department (ED), ED observation, day hospital, and hospital admissions for adults with sickle cell disease.
West J Emerg Med 2018 Mar;19(2):311-18. doi: 10.5811/westjem.2017.9.35422.
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Keywords: Emergency Department, Healthcare Utilization, Hospitalization, Quality Improvement, Sickle Cell Disease
Tanabe P, Silva S, Bosworth HB
A randomized controlled trial comparing two vaso-occlusive episode (VOE) protocols in sickle cell disease (SCD).
Limited evidence guides opioid dosing strategies for acute Sickle Cell (SCD) pain. In this randomized control study, the investigators compared two National Heart, Lung and Blood Institute (NHBLI) recommended opioid dosing strategies (weight-based vs. patient-specific) for emergency department (ED) treatment of acute vaso-occlusive episodes (VOE).
AHRQ-funded; HS019646.
Citation: Tanabe P, Silva S, Bosworth HB .
A randomized controlled trial comparing two vaso-occlusive episode (VOE) protocols in sickle cell disease (SCD).
Am J Hematol 2018 Feb;93(2):159-68. doi: 10.1002/ajh.24948..
Keywords: Medication, Opioids, Pain, 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
Crawford RD, Jonassaint CR
Adults with sickle cell disease may perform cognitive tests as well as controls when processing speed is taken into account: a preliminary case-control study.
The authors aimed to: (1) evaluate cognitive function among adults with sickle cell disease using a computer-administered neuropsychological test; and (2) replicate previously identified differences in processing speed between patients with sickle cell disease and controls.They replicated previous findings showing a greater than 10-point deficit in processing speed among patients with sickle cell disease. However, when differences in processing speed are taken into account, patients perform equally well or better than controls on cognitive tasks.
AHRQ-funded; HS022989.
Citation: Crawford RD, Jonassaint CR .
Adults with sickle cell disease may perform cognitive tests as well as controls when processing speed is taken into account: a preliminary case-control study.
J Adv Nurs 2016 Jun;72(6):1409-16. doi: 10.1111/jan.12755.
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Keywords: Neurological Disorders, Sickle Cell Disease
Jonassaint CR, Beach MC, Haythornthwaite JA
The association between educational attainment and patterns of emergency department utilization among adults with sickle cell disease.
The authors aimed to determine what factors are related to emergency department visits in hopes of guiding treatments and early interventions. They concluded that early interventions addressing disparities in academic performance, especially for those children most at risk, may lead to improved long-term health outcomes in this population.
AHRQ-funded; HS022989.
Citation: Jonassaint CR, Beach MC, Haythornthwaite JA .
The association between educational attainment and patterns of emergency department utilization among adults with sickle cell disease.
Int J Behav Med 2016 Jun;23(3):300-09. doi: 10.1007/s12529-016-9538-y.
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Keywords: Education, Emergency Department, Healthcare Utilization, Pain, Sickle Cell Disease
Kayle M, Brennan-Cook J, Carter BM
Evaluation of a sickle cell disease educational website for emergency providers.
Electronic surveys were used to conduct a formal evaluation of the accuracy and relevance of the website's content, as well as the effectiveness of the education modules in improving knowledge among health care providers. Both sickle cell disease experts and ED providers agreed that the module content was clear and easy to understand, accurate, comprehensive, relevant, and met module objectives.
AHRQ-funded; HS019646.
Citation: Kayle M, Brennan-Cook J, Carter BM .
Evaluation of a sickle cell disease educational website for emergency providers.
Adv Emerg Nurs J 2016 Apr-Jun;38(2):123-32. doi: 10.1097/tme.0000000000000099.
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Keywords: Education: Continuing Medical Education, Emergency Department, Health Information Technology (HIT), Provider, Sickle Cell Disease