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PubMed Journals Articles About "Pediatric Adult Transition Sickle Cell Disease Survey Results" RSS

19:28 EST 24th February 2020 | BioPortfolio

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Showing "Pediatric Adult Transition Sickle Cell Disease Survey Results" PubMed Articles 1–25 of 80,000+

Web-Based Technology to Improve Disease Knowledge Among Adolescents With Sickle Cell Disease: Pilot Study.

Advancements in treatment have contributed to increased survivorship among children with sickle cell disease (SCD). Increased transition readiness, encompassing disease knowledge and self-management skills before transfer to adult care, is necessary to ensure optimal health outcomes. The Sickle Cell Transition E-Learning Program (STEP) is a public, Web-based, 6-module tool designed to increase transition readiness for youth with SCD.


The increased neopterin content in turkish pediatric patients with sickle cell anemia.

In the present study, the possible activation of cellular immunity in SCD patients was investigated. As immune activation parameters, neopterin concentrations and kynurenine/tryptophan ratio for tryptophan degradation in 35 pediatric patients with sickle cell disease (31 HbSS and 4 HbSß) were determined. Our results have shown that neopterin levels (both urinary and serum) are increased in pediatric patients with sickle cell disease. The increase in neopterin concentration was accompanied by significantly ...

Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study.

Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-man...


Evaluation of Ocular Complications by Using Optical Coherence Tomography in Children With Sickle Cell Disease Eye Findings in Children With Sickle Cell Disease.

The aim of this study was to compare optical coherence tomography (OCT) findings in pediatric patients with sickle cell disease (SCD) and healthy individuals and to investigate associations between these data and the patients' systemic findings.

Pediatric nurses' role in health care transition planning: National survey findings and practice implications.

Youth and young adults (YYA) with chronic illness and/or disability (CID) face numerous challenges in transition from pediatric to adult health care. Established evidence supports interdisciplinary team approaches to preparing youth and families for transition and transfer. The purpose of this national survey was to address a gap in current knowledge specific to pediatric nursing professionals' roles and responsibilities in health care transition planning (HCTP).

Correlates of Cognitive Function in Sickle Cell Disease: A Meta-Analysis.

To provide a comprehensive quantitative review of biological, environmental, and behavioral correlates across domains of cognitive function in sickle cell disease (SCD).

Splenectomy is not associated with a higher tricuspid regurgitant jet velocity in people with sickle cell anemia.

Vascular complications such as pulmonary hypertension (PH) occur at an increased rate following splenectomy in patients with various hemolytic blood disorders including thalassemia. The goal of this retrospective cross-sectional analysis was to assess the independent association of splenectomy with an elevated tricuspid regurgitation velocity (TRV) in people with homozygous sickle cell disease (HbSS). TRV is a noninvasive screening test for PH and a surrogate marker of prognosis in sickle cell disease (SCD)...

Reflections of Healthcare Experiences of African Americans With Sickle Cell Disease or Cancer: A Qualitative Study.

The experiences of African American adult patients before, during, and after acute care utilization are not well characterized for individuals with sickle cell disease (SCD) or cancer.

Multicenter Evaluation of HemoTypeSC as a Point-of-Care Sickle Cell Disease Rapid Diagnostic Test for Newborns and Adults Across India.

Sickle cell anemia is the commonest genetic disorder in India, and the frequency of the sickle cell gene is very high in the remote tribal areas where facilities are generally limited. Therefore, a rapid and affordable point-of-care test for sickle cell disease is needed.

Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons.

The number of children with complex medical conditions surviving to adulthood is increasing. A planned transition to adult care systems is essential to the health maintenance of these patients. Guidance has been established for the general health care transition (HCT) from adolescence to adulthood. No formal assessment of the performance of pediatric neurosurgeons in HCT has been previously performed. No "best practice" for this process in pediatric neurosurgery currently exists. The authors pursued two goa...

Association of the Δ Mutant Genotype with Sickle Cell Disease in Egyptian Patients.

Sickle cell disease is considered the most common single base mutation in the world, with >250,000 new patients being discovered each year. It consists of a wide spectrum of clinical presentations and complications. The is the mutant genotype of C-C chemokine receptor 5 (CCR5). It is widely distributed due to several micro organisms that target macrophages in different populations. Theoretically, confers an advantage to sickle cell disease patients. The chronic inflammatory response is the main pathogenes...

Prevalence of Bacteremia in Febrile Patients With Sickle Cell Disease: Meta-Analysis of Observational Studies.

Pneumococcal vaccination has decreased the bacteremia rate in both the general pediatric and sickle cell disease (SCD) populations. Despite this decrease, and an increasing concern for antibiotic resistance, it remains standard practice to obtain blood cultures and administer antibiotics in all febrile (>38.5°C) patients with SCD. We conducted a systematic review and meta-analysis of the available studies of the prevalence of bacteremia in febrile patients with SCD.

Liver Stiffness Measurement by Vibration Controlled Transient Elastography Does Not Correlate to Hepatic Iron Overload in Children With Sickle Cell Disease.

Children with sickle cell disease (SCD) are at risk of liver injury because of sickle cell hepatopathy and iron overload from chronic transfusions (CT). The authors examine the association between iron overload and liver stiffness measurement (LSM) by vibration controlled transient elastography (VCTE), which has been shown to correlate with fibrosis.

Characteristics and outcomes of osteomyelitis in children with sickle cell disease: A 10-year single-center experience.

Patients with sickle cell disease (SCD) are at increased risk for osteomyelitis (OM). Diagnosis of OM in SCD is challenging as the clinical presentation is similar to a vasoocclusive crisis (VOC) with no diagnostic gold standard. We report characteristics and outcomes of OM in SCD patients treated at our center over 10-year period.

Prevalence of enuresis and its impact in quality of life of patients with sickle cell disease.

Evidence indicates an increase in the prevalence of enuresis in individuals with sickle cell disease. The present study aims to evaluate the prevalence and impact of enuresis on quality of life in individuals with sickle cell disease.

Reproductive intentions in mothers of young children with sickle cell disease.

Sickle cell disease (SCD) is an autosomal recessive hemoglobinopathy associated with morbidity and mortality. We sought to understand family planning intentions of parents of young children with SCD including the awareness of three reproductive options (adoption, in vitro fertilization with egg/sperm donation [IVFD], in vitro fertilization [IVF] with preimplantation genetic testing [IVF/PGT]) to decrease the risk of having a child with SCD.

American Society of Hematology 2019 guidelines for sickle cell disease: cardiopulmonary and kidney disease.

Prevention and management of end-organ disease represent major challenges facing providers of children and adults with sickle cell disease (SCD). Uncertainty and variability in the screening, diagnosis, and management of cardiopulmonary and renal complications in SCD lead to varying outcomes for affected individuals.

Frequency and Predictors of Successful Transition of Care for Young Adults with Childhood Celiac Disease.

Transition from pediatric to adult care for individuals with chronic conditions is important to prevent gaps in care, though this has not been well-studied in celiac disease (CD). The aim of this study was to discern rates and predictors of successful transition of care for young adults with childhood-diagnosed CD.

Frequency and Predictors of Successful Transition of Care for Young Adults With Childhood Celiac Disease.

Transition from pediatric to adult care for individuals with chronic conditions is important to prevent gaps in care, though this has not been well-studied in celiac disease (CD). The aim of this study was to discern rates and predictors of successful transition of care for young adults with childhood-diagnosed CD.

Acute Care Utilization at End of Life in Sickle Cell Disease: Highlighting the Need for a Palliative Approach.

People with sickle cell disease (SCD) have a life expectancy of

Adult patient perspectives on phenylketonuria care: Highlighting the need for dedicated adult management and services.

Phenylketonuria (PKU) is an autosomal recessive metabolic disorder characterized by an inability to metabolize the amino acid phenylalanine (Phe). If left untreated, an accumulation of Phe results in neurodevelopmental, neurological and psychological impairments. Advancements in detection and treatment of PKU have improved outcomes and life expectancy for these patients, emphasizing the need for life-long, specialized care. Due to the paucity of adult-focused PKU clinics, patients who are well into adulthoo...

Transition of patients with childhood onset epilepsy: Perspectives from pediatric and adult neurologists.

Transition from pediatric to adult care systems is a major challenge in the management of adolescents with epilepsy. The comparison of pediatric and adult physicians' points of view on this issue is scarcely described. The aim of this study was to understand pediatric and adult neurologists' experience and opinions on transition in epilepsy in France. We investigate the age at which they usually transfer patients, their opinion on the factors that positively or negatively impact transition, on the help prov...

Massive Splenic Infarction and Autosplencetomy: First Presentation of Homozygous Sickle Cell Disease in a Toddler.

Practices, attitudes and barriers faced by internists and pediatricians in transitioning young adult patients to adult medicine.

Purpose To assess perspectives of clinicians at an academic medical center regarding current practices, barriers and possible interventions in transitioning young adult patients to adult care. Methods Electronic survey results from licensed independent providers in the Departments of Internal Medicine (n = 87) and Pediatrics (n = 49) were analyzed. Results The majority of providers at our institution are unaware of and do not follow national transition guidelines. Seventy-seven percent of pediatricians prov...

Validation of a composite vascular high risk profile for adult patients with sickle cell disease.


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