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- (-) Sickle Cell Disease (49)
- Social Determinants of Health (1)
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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 49 Research Studies DisplayedMorrone K, Andreca M, Silver EJ
Associating a standardized reporting tool for chest radiographs with clinical complications in pediatric acute chest syndrome.
The objective of this retrospective cohort study was to analyze the interobserver agreement among pediatric radiologists' interpretations for pediatric acute chest syndrome (ACS) chest radiographs. The researchers also explored the association of radiographic findings with ACS complications. Data was taken from pediatric ACS admissions from a single institution in 2019. The results showed moderate to near-perfect agreement between radiologists. Left lower opacity, and pleural effusion were associated with increased risk of ACS complications.
AHRQ-funded.
Citation: Morrone K, Andreca M, Silver EJ .
Associating a standardized reporting tool for chest radiographs with clinical complications in pediatric acute chest syndrome.
Pediatr Pulmonol 2023 Nov; 58(11):3139-46. doi: 10.1002/ppul.26634..
Keywords: Children/Adolescents, Imaging, Sickle Cell Disease, Respiratory Conditions
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.
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
Wachnik AA, Welch-Coltrane JL, Adams MCB
A standardized emergency department order set decreases admission rates and in-patient length of stay for adults patients with sickle cell disease.
The purpose of this 3-year prospective analysis study was to assess a quality improvement project to standardize Emergency Department (ED) care for patients presenting with pain associated with sickle cell disease (SCD). IN 2019 the researchers implemented an ED order set in to improve care and provide adequate management of analgesia. The primary outcome was the overall hospital admission rate for patients after the intervention, and the secondary outcome measures included ED disposition, rate of return to the ED within 72 hours, ED pain scores at admission and discharge, ED treatment time, in-patient length of stay, non-opioid medication use, and opioid medication use. The study found an overall 67% reduction in the hospital admission rate after implementation of the order set and a significant decrease in the percentage admission rate month over month. Time to the first non-opioid analgesic decreased by 71 minutes and there was no change in time to the first opioid medication. The rate of return to the ED within 72 hours did not change and the ED elopement rate did not change. There were significant increases in the prescribing of orally administered acetaminophen, celecoxib, and tizanidine, and intravenous ketamine and ketorolac. ED pain scores at discharge did not change for hospital-admitted and non-admitted patients. The possible reduction in costs was $193,440 during the 12-month observation period, and the average cost per visit decreased by $792. The researchers concluded that the ED order set decreased the rate of hospital admissions and the timeliness of analgesia administration without having a negative impact on the pain of the patients.
AHRQ-funded; HS028584.
Citation: Wachnik AA, Welch-Coltrane JL, Adams MCB .
A standardized emergency department order set decreases admission rates and in-patient length of stay for adults patients with sickle cell disease.
Pain Med 2022 Dec;23(12):2050-60. doi: 10.1093/pm/pnac096..
Keywords: Sickle Cell Disease, Emergency Department, Hospitalization
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, Dombkowski KJ, Madden B
Considerations when aggregating data to measure performance across levels of the health care system.
Investigators examined attribution when measuring quality at varying levels of the health care system. Using Medicaid claims, they concluded that, when applying attribution models, it was essential to consider the potential to induce health disparities. Further, differential attribution may have unintentional consequences that deepen health disparities, particularly when considering incentive programs for health plans to improve the quality of care.
AHRQ-funded; HS025292; HS025299.
Citation: Reeves SL, Dombkowski KJ, Madden B .
Considerations when aggregating data to measure performance across levels of the health care system.
Acad Pediatr 2022 Apr;22(3s):S119-s24. doi: 10.1016/j.acap.2021.11.013..
Keywords: Sickle Cell Disease, Research Methodologies, Provider Performance
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
Tanabe P, Blewer AL, Bonnabeau E
Dissemination of evidence-based recommendations for sickle cell disease to primary care and emergency department providers in North Carolina: a cost benefit analysis.
Sickle cell disease (SCD) is a genetic condition affecting primarily individuals of African descent, who happen to be disproportionately impacted by poverty and who lack access to health care. Many providers do not feel prepared to care for individuals with SCD, despite the existence of evidence-based guidelines. The authors report the development of a SCD toolbox and the dissemination process to primary care and emergency department (ED) providers in North Carolina (NC). They report the effect of this dissemination on health-care utilization, cost of care, and overall cost-benefit.
AHRQ-funded; HS024501.
Citation: Tanabe P, Blewer AL, Bonnabeau E .
Dissemination of evidence-based recommendations for sickle cell disease to primary care and emergency department providers in North Carolina: a cost benefit analysis.
J Health Econ Outcomes Res 2021 Apr 1;8(1):18-28. doi: 10.36469/jheor.2021.21535..
Keywords: Sickle Cell Disease, Evidence-Based Practice, Guidelines, Primary Care, Emergency Department, Tools & Toolkits
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
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
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
Kayle M, Docherty SL, Sloane R
Transition to adult care in sickle cell disease: a longitudinal study of clinical characteristics and disease severity.
Researchers conducted a longitudinal analysis of medical records of adolescents and young adults (AYAs) with sickle cell disease (SCD) to describe the clinical course among AYAs during transition to adult care. They found that, whereas most AYAs had stable severity, nearly a quarter had increasing severity over time. AYAs with increasing severity had more complications, were more likely to transfer to adult care, and demonstrated higher and longer adult SCD care utilization compared with AYAs with stable severity.
AHRQ-funded; HS023989.
Citation: Kayle M, Docherty SL, Sloane R .
Transition to adult care in sickle cell disease: a longitudinal study of clinical characteristics and disease severity.
Pediatr Blood Cancer 2019 Jan;66(1):e27463. doi: 10.1002/pbc.27463..
Keywords: Children/Adolescents, Patient-Centered Healthcare, Sickle Cell Disease, Transitions of Care, Young Adults
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
Knight LMJ, Onsomu EO, Bosworth HB
Exploring emergency department provider experiences with and perceptions of weight-based versus individualized vaso-occlusive treatment protocols in sickle cell disease.
This study compared perceptions of nurses and physicians on protocols to treat sickle cell disease vaso-occlusive episodes (VOEs) in emergency rooms (ERs). Two different protocols were used for VOEs: weight –based and individualized vaso-occlusive. Nurses were less satisfied with clarity of the protocols than physicians. Pain management protocol perceptions differed widely between physicians, residents, physician assistants, nurse practitioners and nurses.
AHRQ-funded; HS024501.
Citation: Knight LMJ, Onsomu EO, Bosworth HB .
Exploring emergency department provider experiences with and perceptions of weight-based versus individualized vaso-occlusive treatment protocols in sickle cell disease.
Adv Emerg Nurs J 2019 Jan/Mar;41(1):86-97. doi: 10.1097/tme.0000000000000232..
Keywords: Emergency Department, Medication, Opioids, Pain, Provider, Sickle Cell Disease