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Research Studies is a compilation of published research articles funded by AHRQ or authored by AHRQ researchers.
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1 to 15 of 15 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
Hinton CF, Homer CJ, Thompson AA
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
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
