scholarly journals The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea

2012 ◽  
Vol 34 (4) ◽  
pp. 270-274 ◽  
Author(s):  
Luiz Bernardino Lima da Silva ◽  
Maria Lúcia Ivo ◽  
Albert Schiaveto de Souza ◽  
Elenir Rose Jardim Cury Pontes ◽  
Alexandra Maria Almeida Carvalho Pinto ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Sickle Cell Anemia

Quality of Life in Egyptian Children and Adolescents with Sickle Cell Anemia

2017 ◽  
Vol 34 (1-2) ◽  
pp. 109-118
Author(s):  
Mohamed Abdel-Mohsen Ellabody ◽  
Hisham Ahmed Ramy ◽  
Naglaa Fathy Mahmoud
Keyword(s):  
Quality Of Life ◽  
Children And Adolescents ◽  
Sickle Cell ◽  
Sickle Cell Anemia ◽  
Egyptian Children

77P Measurement of health quality of life in the multicenter study of hydroxyurea in sickle cell anemia

1994 ◽  
Vol 15 (3) ◽  
pp. 120
Author(s):  
F. Barton ◽  
M. Terrin ◽  
S. Charache ◽  
M. Koshy ◽  
P. Swerdlow ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Sickle Cell Anemia ◽  
Multicenter Study ◽  
Health Quality ◽  
Health Quality Of Life

scholarly journals Qualidade de vida dos portadores de doença falciforme

2019 ◽  
Vol 13 (2) ◽  
pp. 24
Author(s):  
Kamila Tuany Lacerda Leão Lima ◽  
João Otávio Ferreira Pereira ◽  
Paulo Roberto De Melo Reis ◽  
Keila Correia De Alcântara ◽  
Flávia Melo Rodrigues
Keyword(s):  
Quality Of Life ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Functional Capacity ◽  
Sickle Cell Anemia ◽  
Physical Aspect ◽  
Cell Disease ◽  
Calidad De Vida ◽  
Sf 36

RESUMOObjetivo: avaliar a qualidade de vida de portadores de células falciformes atendidos pelo Programa de Anemia Falciforme. Método: trata-se de um estudo quantitativo, descritivo e analítico em 20 portadores de anemia falciforme e 40 indivíduos não falciformes. Coletaram-se os dados por meio de entrevistas no período entre fevereiro a maio de 2015. Avaliou-se a qualidade de vida por meio de SF-36 e WHOQOL-BREF. Apresentaram-se os resultados em forma de tabelas. Resultados: constata-se que a maioria dos pacientes com doença falciforme se declara como negros e castanhos e com baixo nível de escolaridade; os aspectos físicos e a capacidade funcional tiveram os piores resultados e, com a idade, o aspecto físico se torna mais comprometido. Mostrou-se, pelo questionário SF-36, que, entre os escores, os indivíduos com DF apresentavam dor, capacidade funcional, vitalidade, aspectos físicos, emocionais e de saúde mental como os mais prejudicados em relação ao grupo de pacientes sem DF. Conclusão: apresentou-se, pela avaliação WHOQOL-BREF, comprometimento significativo da qualidade de vida física e geral entre os pacientes com DF; já os participantes com doença falciforme sofrem um impacto negativo na qualidade de vida, o que interfere e influencia a saúde dessas pessoas. Descritores: Qualidade de Vida; Doença Crônica; Perfil de Impacto da Doença; Anemia Falciforme; Anemia Hemolítica; Eritrócitos. ABSTRACT Objective: to evaluate the quality of life of sickle cell patients treated by the Sickle Cell Anemia Program. Method: this is a quantitative, descriptive and analytical study in 20 patients with sickle cell anemia and 40 non-sickle individuals. Data was collected through interviews between February and May 2015. Quality of life was evaluated through SF-36 and WHOQOL-BREF. Results were presented in the form of tables. Results: the majority of patients with sickle cell disease declare themselves as black and brown with a low level of schooling; the physical aspects and the functional capacity had the worst results and, with age, the physical aspect becomes more compromised. The SF-36 questionnaire showed that, among the scores, individuals with FD presented pain, functional capacity, vitality, physical, emotional and mental health aspects as the most impaired in relation to the group of patients without SCD. Conclusion: the WHOQOL-BREF evaluation showed a significant impairment of physical and general quality of life among patients with DF; participants with sickle-cell disease have a negative impact on quality of life, which interferes with and influences the health of these people. Descritores: Quality of Life; Chronic Disease; Sickness Impact Profile; Sickle Cell Anemia; Anemia Hemolytic; Erythrocytes.RESUMEN Objetivo: evaluar la calidad de vida de portadores de células falciformes atendidos por el Programa de Anemia Falciforme. Método: se trata de un estudio cuantitativo, descriptivo y analítico en 20 portadores de anemia falciforme y 40 individuos no falciformes. Se recogieron los datos a través de entrevistas en el período entre febrero a mayo de 2015. Se evaluó la calidad de vida por medio de SF-36 y WHOQOL-BREF. Se presentaron los resultados en forma de tablas. Resultados: se constata que la mayoría de los pacientes con enfermedad falciforme se declara como negros y castaños y con bajo nivel de escolaridad; los aspectos físicos y la capacidad funcional tuvieron los peores resultados y, con la edad, el aspecto físico se vuelve más comprometido. Se mostró, por el cuestionario SF-36, que entre los escores, los individuos con DF presentaban dolor, capacidad funcional, vitalidad, aspectos físicos, emocionales y de salud mental como los más perjudicados en relación al grupo de pacientes sin DF. Conclusión: se presentó, por la evaluación WHOQOL-BREF, un compromiso significativo de la calidad de vida física y general entre los pacientes con DF; ya los participantes con enfermedad falciforme sufren un impacto negativo en la calidad de vida, lo que interfiere e influye en la salud de esas personas. Descritores: Calidad de Vida; Enfermedad Crónica; Perfil de Impacto de la Enfermedad; Anemia de Células falciformes; Anemia Hemolítica; Eritrocitos. 

scholarly journals An Ayurvedic Management of Sickle Cell Anemia in Children: A case study

2021 ◽  
Vol 12 (3) ◽  
pp. 714-717
Author(s):  
Akriti Gupta ◽  
Swapnil Raskar
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Sickle Cell Anemia ◽  
Globin Gene ◽  
Genetic Diseases ◽  
Single Amino Acid ◽  
Ayurvedic Medicine ◽  
Chromosome 11

Introduction:- Sickle cell anemia is a term for a group of genetic diseases characterized by the production of hemoglobin (Hb) "S". This is the result of replacing the base pair thymine at the 6th position of the β-globin gene on chromosome 11 with adenine and replacing valine with glutamic acid. A single amino acid substitution is the reason for the profound changes in the stability and solubility of the hemoglobin "S" molecule. Due to its chronic nature and painful crisis, children’s quality of life is difficult. From now on, there is no final treatment other than a successful bone marrow transplant. Its symptoms and the nature of the disease can be compared with Pandu. If a drug improves the quality of life and maintains the health of the patient, then the drug and efforts will be beneficial to society. Material and Methods:- A 9-year-old male patient was diagnosed with sickle cell anemia. Symptoms include joint and limb pain, anorexia, fatigue, loss of appetite, and weight loss. approached the OPD, department of Kaumarbhritya, Parul Institute of Ayurved, Vadodara.  Observations and Results:-The patient is taking modern medicine (1 mg folic acid once a day). The Childs parents also wanted to take Ayurvedic medicine, so they came here for 2 months of Ayurvedic medicine treatment, during which he did not have a pain crisis.Weight improved From 16 kg to 18 kg.The quality of life of a patient is also improved. Conclusion:-Therefore, the purpose of this case study is to study the pathophysiology and treatment of sickle cell anemia from an Ayurvedic perspective and to study the possible mechanism of action of the drug.

scholarly journals Hydroxyurea and sickle cell anemia: effect on quality of life

2006 ◽  
Vol 4 (1) ◽  
Author(s):  
Samir K Ballas ◽  
Franca B Barton ◽  
Myron A Waclawiw ◽  
Paul Swerdlow ◽  
James R Eckman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Sickle Cell Anemia

scholarly journals Effect of Self-Learning Guidelines on Quality of Life and Self –Care Reported Practice of Adolescents with Sickle Cell Anemia

2021 ◽  
Vol 2 (2) ◽  
pp. 400-415
Author(s):  
Nora Mahdy Fouda ◽  
Randa Mohamed Adly ◽  
Faten Shafik Mahmoud ◽  
Rawia Abd El-Ghany Mohamed
Keyword(s):  
Quality Of Life ◽  
Sickle Cell ◽  
Sickle Cell Anemia ◽  
Self Care ◽  
Self Learning

scholarly journals Whole-exome sequencing indicates FLG2 variant associated with leg ulcers in Brazilian sickle cell anemia patients

2019 ◽  
Vol 244 (11) ◽  
pp. 932-939 ◽  
Author(s):  
Gabriela Queila de Carvalho-Siqueira ◽  
Galina Ananina ◽  
Bruno Batista de Souza ◽  
Murilo Guimarães Borges ◽  
Mirta Tomie Ito ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Exome Sequencing ◽  
Whole Exome Sequencing ◽  
Sickle Cell ◽  
Sickle Cell Anemia ◽  
Leg Ulcer ◽  
Leg Ulcers ◽  
Whole Exome ◽  
Extreme Phenotypes

Although sickle cell anemia results from homozygosity for a single mutation at position 7 of the β-globin chain, the clinical aspects of this condition are very heterogeneous. Complications include leg ulcers, which have a negative impact on patients’ quality of life and are related to the severity of the disease. Nevertheless, the complex pathogenesis of this complication has yet to be elucidated. To identify novel genes associated with leg ulcers in sickle cell anemia, we performed whole-exome sequencing of extreme phenotypes in a sample of Brazilian sickle cell anemia patients and validated our findings in another sample. Our discovery cohort consisted of 40 unrelated sickle cell anemia patients selected based on extreme phenotypes: 20 patients without leg ulcers, aged from 40 to 61 years, and 20 with chronic leg ulcers. DNA was extracted from peripheral blood leukocytes and used for whole-exome sequencing. After the bioinformatics analysis, eight variants were selected for validation by Sanger sequencing and TaqMan® genotyping in 293 sickle cell anemia patients (153 without leg ulcers) from two different locations in Brazil. After the validation, Fisher’s exact test revealed a statistically significant difference in a stop codon variant (rs12568784 G/T) in the FLG2 gene between the GT and GG genotypes ( P = 0.035). We highlight the importance of rs12568784 in leg ulcer development as this variant of the FLG2 gene results in impairment of the skin barrier, predisposing the individual to inflammation and infection. Additionally, we suggest that the remaining seven variants and the genes in which they occur could be strong candidates for leg ulcers in sickle cell anemia. Impact statement To our knowledge, the present study is the first to use whole-exome sequencing based on extreme phenotypes to identify new candidate genes associated with leg ulcers in sickle cell anemia patients. There are few studies about this complication; the pathogenesis remains complex and has yet to be fully elucidated. We identified interesting associations in genes never related with this complication to our knowledge, especially the variant in the FLG2 gene. The knowledge of variants related with leg ulcer in sickle cell anemia may lead to a better comprehension of the disease’s etiology, allowing prevention and early treatment options in risk genotypes while improving quality of life for these patients.

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