Journal articleMultiple sclerosis and related disorders · May 2026
BackgroundPersons with multiple sclerosis (MS) rely heavily on the emergency department (ED) for acute care, with marginalized populations bearing an unequal MS burden of disease. Understanding how social determinants of health influence ED utiliz ...
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Journal articlePublic health reports (Washington, D.C. : 1974) · March 2026
ObjectivesUnderstanding patterns of hospital admissions and emergency department (ED) visits among people with sickle cell disease is critical for improving care and access to care for this population. The objective of this study was to characteri ...
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Journal articleJournal of Sickle Cell Disease · January 1, 2026
Sickle cell disease (SCD) is a lifelong condition affecting approximately 100 000 individuals in the United States. It causes progressive organ damage through hemolysis, vaso-occlusion, and chronic inflammation. Patients frequently present to emergency dep ...
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Journal articleJournal of Sickle Cell Disease · January 1, 2026
Objectives: Emergency department (ED) utilization among transition age adolescents and young adults (AYAs, 14-30 years old) with SCD is linked to morbidity and mortality. We describe age-related ED utilization and associations with sociodemographic charact ...
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Journal articlePediatric blood & cancer · September 2025
BackgroundWhereas pregnancy in sickle cell disease (SCD) is considered high risk, there is limited understanding of pregnancy- and SCD-related morbidity to inform clinical practice and health policy.ProcedureThis retrospective cohort stud ...
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Journal articleJAMA Netw Open · June 2, 2025
IMPORTANCE: Sickle cell disease (SCD) is a complex hemoglobinopathy. Vaso-occlusive episodes are the primary cause of emergency department (ED) utilization among individuals with SCD. Literature lacks a standardized definition for high ED utilization. OBJE ...
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Journal articleJournal of pediatric hematology/oncology · May 2025
Hydroxyurea is the primary disease-modifying therapy for sickle cell disease (SCD), yet adherence is low. Our objective was to identify patterns and predictors of hydroxyurea adherence among Medicaid enrollees with SCD. Children and adults with SCD who rec ...
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Journal articleBlood Adv · July 23, 2024
Guidelines recommend transfer to adult health care within 6 months of completing pediatric care; however, this has not been studied in sickle cell disease (SCD). We hypothesized that longer transfer gaps are associated with increased resource utilization. ...
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Journal articleMMWR Morb Mortal Wkly Rep · March 28, 2024
Sickle cell disease (SCD) remains a public health priority in the United States because of its association with complex health needs, reduced life expectancy, lifelong disabilities, and high cost of care. A cross-sectional analysis was conducted to calcula ...
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Journal articleJAMIA Open · July 2023
OBJECTIVE: Population-level data on sickle cell disease (SCD) are sparse in the United States. The Centers for Disease Control and Prevention (CDC) is addressing the need for SCD surveillance through state-level Sickle Cell Data Collection Programs (SCDC). ...
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Journal articlePediatric hematology and oncology · February 2023
Sickle cell disease (SCD) state level surveillance data are limited. We performed a retrospective review of emergency department (ED) visits and hospitalizations from individuals with SCD in Illinois (2016-2020) using the Illinois Health and Hospital Assoc ...
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Journal articleThe Journal of urology · January 2022
PurposeClean intermittent catheterization (CIC) responsibility among youths with spina bifida is not well studied. We sought to determine longitudinal trajectories of CIC responsibility to examine the transition of CIC responsibility from caregive ...
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Journal articleAmerican journal of hematology · November 2021
Individuals with sickle cell disease (SCD) experience neurocognitive decline, low medication adherence, increased unemployment, and difficulty with instrumental activities of daily living (IADL). The relationship between self-perceived cognitive difficulti ...
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Journal articleTeaching and Learning in Nursing · July 1, 2021
At the start of the COVID-19 pandemic, pre-licensure nursing programs swiftly adapted the curriculum to accommodate the cessation of in-person clinical and transition to all-virtual clinical education. Once in-person clinical resumed, a re-design of clinic ...
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Journal articleJournal of pediatric psychology · November 2020
ObjectiveTo determine if there are distinct developmental trajectories of medical responsibility in youth with spina bifida (SB) across ages 8-17 years and to identify condition-related, parental, and family systems predictors of membership in the ...
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Journal articlePediatric blood & cancer · May 2020
PurposeSickle cell disease (SCD) is associated with high acute healthcare utilization. The purpose of this study was to examine whether Medicaid expansion in California increased Medicaid enrollment, increased hydroxyurea prescriptions filled, and ...
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Journal articlePediatr Blood Cancer · January 2019
BACKGROUND: Sickle cell disease (SCD) is a chronic blood disorder in which mortality has increased for adolescents and young adults (AYA). PROCEDURE: A longitudinal analysis of medical records was conducted to describe the clinical course among AYAs (ages ...
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Journal articleAdvanced emergency nursing journal · April 2016
Sickle cell disease (SCD) is a complex multisystem debilitating disease. Despite its complexity, health care providers who are not SCD experts receive little formal education on SCD. An open-access, educational website, "Emergency Department Sickle Cell Di ...
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Journal articleJ Pediatr Nurs · 2016
UNLABELLED: This study explored the challenges faced by adolescents with sickle cell disease (SCD) and their parents and the work they engage in to progressively shift from parent management to independent adolescent self-management. DESIGN AND METHODS: A ...
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Journal articleSemin Oncol Nurs · August 2015
OBJECTIVES: Using a Life Course Health Development framework, this article summarizes what is known about the impact of cancer and its treatment on the biopsychosocial world of the adolescent and young adult. DATA SOURCES: Published peer reviewed literatur ...
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Journal articleAdvanced emergency nursing journal · October 2014
Patients with sickle cell disease (SCD) often seek care in the emergency department (ED) for pain associated with vaso-occlusive crises. Research has shown that negative provider attitudes serve as a barrier to care in this patient population. Our aim was ...
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Journal articlePaediatric and perinatal epidemiology · May 2014
BackgroundTo explore physicians' opinions and attitudes regarding resuscitation of extremely premature infants (EPIs) in a developing country with suboptimal resources.MethodsA survey was developed, revised, and pilot-tested. All 964 paed ...
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