scholarly journals The impact of sickle cell anemia on the quality of life of sicklers at school age

2019 ◽  
Vol 8 (2) ◽  
pp. 468
Author(s):  
KarimeldinM. A. Salih
Author(s):  
Elaine Cristina Rodrigues Gesteira ◽  
Regina Szylit Bousso ◽  
Maira Deguer Misko ◽  
Carolliny Rossi de Faria Ichikawa ◽  
Patrícia Peres de Oliveira

Aim:  To  identify  scientific  evidence  about  families  of  children  with sickle  cell  disease.  Method:  An  integrative  review  of  the  search  used the  following descriptors:  anemia  sickle  cell;  hemoglobin  SC  disease;  hemoglobin sickle;  family; family  relations;  and,  child.  The  search  was  carried  out  for  literature  in  Portuguese, English,  and  Spanish.  The  search  used  databases  such  as  MEDLINE,  LILACS,  CINAHL, and PubMed, and looked for articles published between January 2005 and January 2015. Results:   There   were   16   articles   selected  that   originated  the   following  thematic categories: the impact of sickle cell disease on the family, psychosocial effects on family dynamics,  child's  quality  of  life,  and  family  and  social  support/support  networks. Discussion:  The  studies  report  that  the  family  remains  the  main  provider  of  care  for children  with  sickle  cell  disease,  and  that  families  faces  challenges  in  achieving comprehensive care and fighting for their children’s quality of life. C onclusion: This evidence  will  provide  support  for  multi-professional  teams  in the  construction  of continuous care for the families of children who are sickle cell patients.


2017 ◽  
Vol 34 (1-2) ◽  
pp. 109-118
Author(s):  
Mohamed Abdel-Mohsen Ellabody ◽  
Hisham Ahmed Ramy ◽  
Naglaa Fathy Mahmoud

1994 ◽  
Vol 15 (3) ◽  
pp. 120
Author(s):  
F. Barton ◽  
M. Terrin ◽  
S. Charache ◽  
M. Koshy ◽  
P. Swerdlow ◽  
...  

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

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. 


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 ◽  
...  

2021 ◽  
Vol 12 (3) ◽  
pp. 714-717
Author(s):  
Akriti Gupta ◽  
Swapnil Raskar

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.


2006 ◽  
Vol 4 (1) ◽  
Author(s):  
Samir K Ballas ◽  
Franca B Barton ◽  
Myron A Waclawiw ◽  
Paul Swerdlow ◽  
James R Eckman ◽  
...  

2016 ◽  
Vol 30 (1) ◽  
Author(s):  
Maria Luiza da Matta Felisberto FERNANDES ◽  
Ichiro KAWACHI ◽  
Patrícia CORRÊA-FARIA ◽  
Saul Martins PAIVA ◽  
Isabela Almeida PORDEUS

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Michelle K. White ◽  
Cory Saucier ◽  
Miranda Bailey ◽  
Denise D’Alessio ◽  
April Foster ◽  
...  

Abstract Background Sickle Cell Disease (SCD) is a genetic progressive vascular disease that impacts patients overall health and quality of life. Sickle-cell pain crises (SCPCs) are a hallmark clinical presentation of SCD and have been associated with increased morbidity and mortality. The Sickle Cell Pain Diary- Self Report (SCPD-S) was developed as a daily patient-reported outcome (PRO) measure primarily intended to capture the frequency and severity of SCD-related pain during and outside of a SCPC. The SCPD-S also examines the impact of the pain associated with an SCPC on other health-related quality of life concepts. The objective of this study was to investigate the content validity of the SCPD-S. Methods The content validation testing included 18 in-depth hybrid concept elicitation and cognitive debriefing interviews conducted with SCD patients in the US aged 12 years and older. Interviewers used a semi-structured interview guide and a think-aloud approach for the cognitive debriefing portion. All interviews were recorded, transcribed, coded and analyzed. Results Eighteen interviews across two rounds were conducted. Round 1 hybrid interviews (n = 12) resulted in the expansion of the SCPD-S from 13 to 19 items. Items on the impact of an SCPC on social and recreational activities, sleep, and emotional well-being were added. Five items were significantly revised, as were three response choice sets. Round 2 hybrid interviews (n = 6) confirmed the comprehensiveness of the revised diary, understandability of the wording, and appropriateness of the recall period and response sets. Saturation analyses specific to concept elicitation revealed that no additional interviews were needed. Conclusions This study provided evidence to support the content validity of the SCPD-S, a self-report daily diary. Data gathered during patient interviews indicated that the SCPD-S is a fit for purpose measure of SCD and SCPC-related pain frequency and severity and the impact of this pain on other health-related quality of life concepts including fatigue and emotional health. The numerous changes to the SCPD-S as a result of the study findings highlight the importance of the content validation process when developing a PRO measure.


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