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Health Care Transition and Patient-Perceived Quality of Life in Sickle Cell DiseaseHaynes, Karen Alicia 01 January 2017 (has links)
Because of the high mortality rate of sickle cell disease (SCD) patients who do not continue care into adulthood, researchers have paid increasing attention to the health care transition experiences of SCD patients. However, a gap exists regarding patients' perspectives of care transition related to their quality of life. The purpose of this phenomenological study, guided by the biosocial-ecological systems model, was to explore the lived health care transition experiences of SCD patients in relation to their health-related quality of life. Data collection included open-ended interviews with 12 patients in the Southwestern United States. Colaizzi's (1978) method of phenomenological data analysis was used to identify themes, including resistance to transition; inadequate transitional support; lack of autonomy and education; fear, anxiety, and stress; and managing other life changes. Results contribute to the existing research on SCD health care transition, broaden understanding of the transition process and provide guidance for improving transition programs.
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A Program Evaluation Of A Support Group For Children With Sickle Cell DiseaseCohen, Rachel M 14 April 2004 (has links)
Children with Sickle Cell Disease (SCD) face medical, psychosocial, and cognitive challenges, which may impede their social and academic functioning. These complications can be lessened through the implementation of comprehensive interventions. This study reviews one comprehensive intervention, a support group, for children with SCD and their families, and reviews the challenges faced by the children and family who participate in the support group as well as those who do not participate. The study has a mixed-method design because the families participated in focus groups, and they completed quantitative instruments, including a knowledge survey, a behavior rating scale, and an instrument to measure the degree that SCD affects one's life. Most children rated SCD as affecting their life a little bit and were knowledgeable in SCD. The children who did not participate in the support group reported less symptoms and a smaller impact on their lives than those who did participate. The results from the behavior rating scale did not reveal any significant behavior problems in these children; however, those who did not participate in the support group had higher ratings than those who did. These results imply that individuals with SCD who are less impacted by the disease may be less likely to attend a support group than those who are more impacted. Additionally, a theme analysis from the focus groups revealed key themes, such as keeping SCD a secret, getting made fun of, missing school, missing PE class, hospital visits, and experiences with pain crises. The findings from this study indicate that SCD does impact the life of children with the disease; however, the impact may be unknown to others and may differ among individuals. The results also imply that school personnel and other students in schools must be accurately informed about the manifestations of SCD to best promote healthy physical and psychosocial development in children with SCD. Finally, support groups can help to reduce symptoms and complications related to the disease.
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Análise do catabolismo da hemoglobina de Plasmodium falciparum. / Analysis of the haemoglobin catabolism of Plasmodium falciparum.Lindner, Jasmin 07 June 2017 (has links)
O metabolismo de nutrientes abriga um alto potencial para o desenvolvimento de novos alvos quimioterápicos para o tratamento do parasita da malária Plasmodium falciparum. A partir de ensaios de crescimento do parasita dentro de eritrócitos geneticamente diferentes, concentrando-se na via catabólica da hemoglobina plasmodial usando parasitas transgênicos, a natureza protetora das variantes da hemoglobina foi investigada. Sendo que Falcipain 2 (FP2) prolifera três vezes mais elevada no sangue de células falciformes do que o Mock, a célula de controle. Adicionalmente, estudos de inibidores indicam que FP2 é uma proteína essencial para o parasita. Em cooperação com o DESY em Hamburgo, Alemanha a estrutura cristalina da amino peptidase P foi resolvida difratando até 1,7 Å. / The metabolism of nutrients harbors a high potential for the development of new chemotherapeutic targets for the treatment of the malaria parasite Plasmodium falciparum. From parasite growth assays within genetically different erythrocytes, concentrating on the catabolic pathway of plasmodial hemoglobin using transgenic parasites, the protective nature of hemoglobin variants was investigated. Since Falcipain 2 (FP2) proliferates three times higher in sickle cell blood than the Mock, the control cell. In addition, inhibitor studies indicate that FP2 is an essential protein for the parasite. In cooperation with DESY in Hamburg, Germany the crystalline structure of the amino peptidase P was resolved diffracting up to 1.7 Å.
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Dépistage Néonatal de la Drépanocytose: Nouvelles Méthodologies/Newborn Screening for Sickle Cell Disease: New MethodologiesBOEMER, François 10 March 2009 (has links)
Until first half of the XX century, sickle cell disease was practically limited to the malaria endemic areas and countries having known an important surge of African slaves. Today, migratory flows and progress of medicine have modified considerably the distribution of sickle cell disease which is from now on a frequent affection in Western Europe.
The preventive implementation of medical care makes it possible to reduce morbidity and mortality associated with this pathology. Stake of a medical policy and economic interests, neonatal screening for hemoglobin disorders justifies then fully the implementation of powerful and adapted means.
In order to initiate a newborn screening programme in our centre, we developed various immunological tests allowing to identify the sickle hemoglobin. We first of all developed an indirect immunoassay and led a population study on 46082 Belgian newborns and 1825 neonates from Central Africa. The performances of this assay were improved thereafter by conceiving a competitive test.
Next, for reasons independent of our will, we had unfortunately to abandon the immunological approach. This methodology was thus supplanted in our center by an innovative method for this indication: the mass spectrometry. Our promising results currently authorize us to perennialize our policy in the neonatal screening for sickle cell disease and open the way for new developments in other fields. /
Jusquà la première moitié du XXe siècle, la drépanocytose se limitait pratiquement aux zones dendémie palustre et aux pays ayant connu un important afflux desclaves dorigine africaine. Aujourdhui, les flux migratoires et les progrès de la médecine ont considérablement modifié la distribution de cette maladie qui est désormais une affection fréquente en Europe occidentale.
La prise en charge précoce permet de réduire la morbidité et la mortalité associées à cette maladie. Enjeu dune politique sanitaire et dintérêts économiques, le dépistage néonatal de la drépanocytose justifie donc ainsi pleinement la mise en uvre de moyens performants et adaptés.
Afin dinitier un programme de dépistage au sein de notre centre, nous avons initialement développé divers tests immunologiques permettant didentifier lhémoglobine anormale. Nous avons tout dabord mis au point un immunoessai indirect et conduit une étude de population sur 46082 nouveau-nés belges et 1825 bébés originaires dAfrique centrale. Les performances de lessai ont par la suite été améliorées en concevant un test compétitif. Lapprovisionnement laborieux danticorps nécessaires aux tests de détection a par la suite entravé notre programme. En effet, la commercialisation en a été interrompue et la production danticorps monoclonaux par nos moyens propres na pas été couronnée du succès escompté.
Lapproche immunologique du dépistage néonatal de la drépanocytose a ainsi été supplantée dans notre centre par une méthode novatrice pour cette indication : la spectrométrie de masse. Nos résultats prometteurs nous autorisent actuellement à pérenniser notre nouvelle façon de faire dans le dépistage néonatal de la drépanocytose et ouvre la voie pour de nouveaux développements dans dautres domaines.
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Hemaglobinopathy and Pregnancy Outcomes: A Historical Cohort StudyLiu, Song 20 January 2012 (has links)
Pregnancy in women with hemoglobinopathy has been associated with an increased risk of adverse pregnancy outcomes. We conducted a historical cohort study using Discharge Abstract Database for the fiscal year 1991-1992 through 2007-2008. We estimated the frequency of pregnant women with hemoglobinopathy and examined their associations with adverse pregnancy outcomes. Women with sickle cell disease are more likely to develop pre-eclampsia and preterm labor, and to undergo cesarean delivery than women with nutritional deficiency anemia, suggesting that there are other mechanisms beyond anemia that may be responsible for an increased risk of adverse pregnancy outcomes. The data suggested a synergistic effect of hemoglobinopathy and pre-eclampsia on preterm labor and cesarean delivery. Prediction models for pre-eclampsia, preterm labor and cesarean delivery were created and internally validated for women with hemoglobinopathy, with satisfactory discrimination and calibration.
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Cerebral Blood Flow Assessment in Children with Sickle Cell DiseaseBehpour, Amir Mahmood 21 November 2012 (has links)
This thesis investigated the role of CBF assessment in the management of stroke in children with
sickle cell disease (SCD). It is divided into two parts. In the first part, a systematic review of CBF
assessment using different imaging modalities in SCD children was designed. The prevalence of
CBF abnormalities was found to be equal to or higher than those of structural MRI and
transcranial Doppler (TCD) in SCD children who have not experienced stroke. Studies reviewed
suggested CBF assessment in SCD could aid in addressing brain abnormalities at the tissue level.
In the second part, the arterial spin labeling (ASL) technique was used to depict CBF
abnormalities in SCD children. ASL demonstrated perfusion abnormalities that seem to remain
invisible in TCD measurements; CBF interhemispheric asymmetries were associated with
clinically silent infarctions with no corresponding flow velocity interhemispheric asymmetries
assessed with TCD.
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Cerebral Blood Flow Assessment in Children with Sickle Cell DiseaseBehpour, Amir Mahmood 21 November 2012 (has links)
This thesis investigated the role of CBF assessment in the management of stroke in children with
sickle cell disease (SCD). It is divided into two parts. In the first part, a systematic review of CBF
assessment using different imaging modalities in SCD children was designed. The prevalence of
CBF abnormalities was found to be equal to or higher than those of structural MRI and
transcranial Doppler (TCD) in SCD children who have not experienced stroke. Studies reviewed
suggested CBF assessment in SCD could aid in addressing brain abnormalities at the tissue level.
In the second part, the arterial spin labeling (ASL) technique was used to depict CBF
abnormalities in SCD children. ASL demonstrated perfusion abnormalities that seem to remain
invisible in TCD measurements; CBF interhemispheric asymmetries were associated with
clinically silent infarctions with no corresponding flow velocity interhemispheric asymmetries
assessed with TCD.
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A study of the reactivity of benzyl-penicillin toward the components of human bloodTalbert, Madonna L. 03 June 2011 (has links)
Benzylpenicillin is incubated with whole human blood. The degree of reactivity of 14C-benzylpenicillin to the components of this blood is determined via a Beckman LS-100C Liquid Scintillation Counter.The oxygen carrying capacities of penicillin treated adult normal and sickled hemoglobin are measured spectrophotometrically and compared to untreated adult normal and sickled hemoglobin.Ball State UniversityMuncie, IN 47306
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Hemaglobinopathy and Pregnancy Outcomes: A Historical Cohort StudyLiu, Song 20 January 2012 (has links)
Pregnancy in women with hemoglobinopathy has been associated with an increased risk of adverse pregnancy outcomes. We conducted a historical cohort study using Discharge Abstract Database for the fiscal year 1991-1992 through 2007-2008. We estimated the frequency of pregnant women with hemoglobinopathy and examined their associations with adverse pregnancy outcomes. Women with sickle cell disease are more likely to develop pre-eclampsia and preterm labor, and to undergo cesarean delivery than women with nutritional deficiency anemia, suggesting that there are other mechanisms beyond anemia that may be responsible for an increased risk of adverse pregnancy outcomes. The data suggested a synergistic effect of hemoglobinopathy and pre-eclampsia on preterm labor and cesarean delivery. Prediction models for pre-eclampsia, preterm labor and cesarean delivery were created and internally validated for women with hemoglobinopathy, with satisfactory discrimination and calibration.
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Pain, Quality of Life, and Coping in Pediatric Sickle Cell DiseaseLim, Crystal Marie Stack 28 May 2009 (has links)
Introduction: Sickle cell disease (SCD) affects predominately African Americans and is one of the most prevalent diseases in the United States (Schecter, 1999). Research has not sufficiently examined whether pain associated with SCD impacts quality of life or whether coping impacts this relation. The purpose of this study was to examine the relation between pain and quality of life in children with SCD and to determine whether coping moderates the relation. A secondary aim was to examine associations between age and pain, quality of life, and coping. A final exploratory aim was to examine the relation between racial identity and study variables. Method: 104 children (M = 12.93 years, SD = 3.17 years) with SCD and their parents participated during a regularly scheduled SCD-related medical visit. Parents completed a demographic form. Children completed the Pediatric Pain Questionnaire (PPQ), the Pain Coping Questionnaire (PCQ), the Pediatric Quality of Life Inventory (PedsQL), Sickle Cell Disease Quality of Life (SCD-QoL), and the Multidimensional Inventory of Black Identity (MIBI). Results: After controlling for site and gender, regression analyses revealed that pain (ƒÒ = -0.37) and emotion-focused avoidance coping (ƒÒ = -0.39) were significant predictors of overall generic quality of life (PedsQL Total Score), total R2 = 0.44, F (5, 93) = 13.88, p < 0.001. There was no significant pain x coping interactions found for overall generic quality of life. Child age was not associated with study variables. Exploratory analyses revealed the MIBI Centrality Scale was associated with PCQ Approach Coping, r (80) = -0.24, p < 0.05, and the MIBI Regard Scale was correlated with PCQ Problem-Focused Avoidance Coping, r (84) = 0.30, p < 0.01. Discussion: This study found that pain and emotion-focused avoidance coping were inversely associated with quality of life in children with SCD. Coping was not found to moderate the relation between pain and overall quality of life. The associations between racial identity and coping demonstrate the importance of further examining cultural factors in children with SCD. In addition, there continues to be a need for future research to focus on the psychosocial functioning of children with SCD.
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