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Topics
- Access to Care (2)
- Antibiotics (1)
- Children/Adolescents (11)
- Chronic Conditions (5)
- Decision Making (1)
- Diagnostic Safety and Quality (1)
- Disparities (1)
- Education: Patient and Caregiver (1)
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- Opioids (1)
- Outcomes (1)
- Pain (5)
- Patient-Centered Healthcare (2)
- Patient-Centered Outcomes Research (4)
- Patient Adherence/Compliance (4)
- Patient and Family Engagement (1)
- Patient Self-Management (1)
- Pneumonia (2)
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- Quality of Life (3)
- (-) Sickle Cell Disease (25)
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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 25 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
Haywood C, Lanzkron S, Hughes M
The association of clinician characteristics with their attitudes toward patients with sickle cell disease: secondary analyses of a randomized controlled trial.
The researchers explore the extent to which clinician characteristics such as race, sex, professional discipline, and amount of exposure to sickle cell disease (SCD) patients in pain may be associated with attitudes toward SCD patients generally. They concluded that clinician attitudes toward sickle cell patients vary notably by the demographic and clinical experiences of the clinician.
AHRQ-funded; HS013903.
Citation: Haywood C, Lanzkron S, Hughes M .
The association of clinician characteristics with their attitudes toward patients with sickle cell disease: secondary analyses of a randomized controlled trial.
J Natl Med Assoc 2015 Jun;107(2):89-96..
Keywords: Sickle Cell Disease, Pain, Disparities
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
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
Friermuth CE, Haywood C, Jr., Silva S
Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers.
The authors aimed to validate a survey that measures attitudes toward sickle cell disease (SCD) patients among emergency department (ED) providers and to compare differences in attitude scores between provider types. They found that, among ED providers, this scale identified a dimension not observed in research with the original instrument among internal medicine providers. They concluded that provider attitudes influence patient-provider interactions and quality of care.
AHRQ-funded; HS019646.
Citation: Friermuth CE, Haywood C, Jr., Silva S .
Attitudes toward patients with sickle cell disease in a multicenter sample of emergency department providers.
Adv Emerg Nurs J 2014 Oct-Dec;36(4):335-47. doi: 10.1097/tme.0000000000000036.
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Keywords: Emergency Department, Emergency Medical Services (EMS), Provider: Health Personnel, Sickle Cell Disease
Reeves S, Garcia E, Kleyn M
Identifying sickle cell disease cases using administrative claims.
The authors developed and tested the accuracy of administrative claims method for identifying children with sickle cell disease (SCD) to enable quality of care assessments among children enrolled in Medicaid. They found that their definition can be used to facilitate a more accurate identification of children with SCD in future studies.
AHRQ-funded; HS020516.
Citation: Reeves S, Garcia E, Kleyn M .
Identifying sickle cell disease cases using administrative claims.
Acad Pediatr 2014 Sep-Oct;14(5 Suppl):S61-7. doi: 10.1016/j.acap.2014.02.008.
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Keywords: Children/Adolescents, Health Insurance, Medicaid, Sickle Cell Disease