Vaso‐occlusive painful events in sickle cell disease: Impact on child well‐being

Brandow, Amanda M.; Brousseau, David C.; Pajewski, Nicholas M.; Panepinto, Julie A.

doi:10.1002/pbc.22222

Cited by 83 publications

(86 citation statements)

References 26 publications

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“…Lowered rates of pain and dactylitis should have a substantial long-term impact with regard to lowering the medical costs of outpatient and inpatient management 14 and improving quality of life. 15 Hydroxyurea was also associated with a 3.5-fold lower rate of ACS and a lower rate of recurrent ACS. A smaller percentage of children in the hydroxyurea group were transfused for ACS compared with the placebo group; however, this difference was not statistically significant.…”

Section: Discussionmentioning

confidence: 99%

Impact of hydroxyurea on clinical events in the BABY HUG trial

Thornburg

Files

Luo

et al. 2012

Blood

229

185

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The Pediatric Hydroxyurea Phase 3 Clinical Trial (BABY HUG) was a phase 3 multicenter, randomized, double-blind, placebocontrolled clinical trial of hydroxyurea in infants (beginning at 9-18 months of age) with sickle cell anemia. An important secondary objective of this study was to compare clinical events between the hydroxyurea and placebo groups. One hundred and ninetythree subjects were randomized to hy- Continuing Medical Education onlineThis activity has been planned and implemented in accordance with the Essential Areas and policies of the Accreditation Council for Continuing Medical Education through the joint sponsorship of Medscape, LLC and the American Society of Hematology. Medscape, LLC is accredited by the ACCME to provide continuing medical education for physicians. Medscape, LLC designates this Journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s) ™ . Physicians should claim only the credit commensurate with the extent of their participationin the activity. All other clinicians completing this activity will be issued a certificate of participation. To participate in this journal CME activity: (1) review the learning objectives and author disclosures; (2) study the education content; (3) take the post-test with a 70% minimum passing score and complete the evaluation at http://www.medscape.org/journal/blood; and (4) view/print certificate. For CME questions, see page 4448. Disclosures The authors, the Associate Editor Narla Mohandas, and CME questions author Laurie Barclay, freelance writer and reviewer, Medscape, LLC, declare no competing financial interests. Learning objectivesUpon completion of this activity, participants will be able to:1. Describe the effect of hydroxyurea on rates of sickle cell complications for infants with sickle cell anemia (SCA) on the basis of a phase 3, multicenter, randomized trial.2. Describe the effect of hydroxyurea on rates of hospitalizations and transfusions for infants with SCA on the basis of a phase 3, multicenter, randomized trial.3. Describe the safety of hydroxyurea for infants with SCA on the basis of a phase 3, multicenter, randomized trial.

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Section: Discussionmentioning

confidence: 99%

Impact of hydroxyurea on clinical events in the BABY HUG trial

Thornburg

Files

Luo

et al. 2012

Blood

229

185

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“…These changes are necessary because of the use of medications, hospitalizations and lost working capacity. Because of these events, there may also be a variable impact on their health-related quality of life (HRQL) (6)(7)(8) .…”

Section: Introductionmentioning

confidence: 99%

Qualidade de vida em portadores de doença falciforme

Menezes¹,

Len

Hilário

et al. 2013

Rev. paul. pediatr.

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Objective:To evaluate the quality of life in children and adolescents with sickle cell disease attending a blood reference center, and to assess the quality of life of their relatives.Methods: Cross-sectional study that included 100 patients with sickle cell disease, which were divided into three subgroups according to age: 5 to 7 (n=18), 8 to 12 (n=32), and 13 to 18 years-old (n=50), and their parents. The Control Group included 50 healthy children and adolescents from a public local school, also divided into the same three age subgroups and their caregivers. The Pediatric Quality of life Inventory (PedsQL), version 4.0, was applied in both groups. The generic questionnaire Medical Outcomes Study 36 -Item Short-Form Health Survey (SF-36) was applied to the relatives. The answers were linearly transformed into a score and compared by nonparametric tests.Results: The PedsQL scores of patients were significantly lower than those obtained in the Control Group (p<0.0001) in all studied areas (physical, emotional, social skills, and school activities). Similarly, SF-36 scores applied to the patients' parents were lower than those obtained in the Control Group in all studied aspects (p<0.0001).Conclusions: Sickle cell disease affects the quality of life of children, adolescents, and their families. Patients sense restrictions in the emotional, social, family and physical aspects, among others.Key-words: quality of life; anemia, sickle cell; children; adolescents. RESUMOObjetivo: Avaliar a qualidade de vida relacionada à saúde de crianças e adolescentes com doença falciforme assistidas em um hemocentro de referência e mensurar a qualidade de vida relacionada à saúde dos respectivos familiares.Métodos: Estudo transversal e seccional com 100 pacientes portadores de doença falciforme, divididos em três subgrupos conforme a faixa etária: de 5 a 7 (n=18), de 8 a 12 (n=32) e de 13 a 18 anos (n=50) e com seus respectivos pais. O Grupo Controle foi composto por 50 crianças e adolescentes saudáveis de uma escola pública local, também divididos nos três subgrupos de idade e seus respectivos cuidadores. Resultados: Os escores dos pacientes no PedsQL foram inferiores àqueles do Grupo Controle (p<0,0001) nos aspectos estudados (capacidades física, emocional, social e atividade escolar). Da mesma forma, os escores do SF-36 aplicados aos pais dos pacientes foram mais baixos que os de pais do Grupo Controle em todos os aspectos estudados (p<0,0001).Conclusões: A doença falciforme compromete a qualidade de vida das crianças, dos adolescentes e de suas respectivas famílias. Os pacientes percebem restrições nos aspectos emocional, social, familiar e físico, dentre outros.Palavras-chave: qualidade de vida; anemia falciforme; crianças; adolescentes. RESUMENObjetivo: Evaluar la calidad de vida relacionada a la salud en niños y adolescentes con enfermedad falciforme asistidas en un servicio de hemoterapia de referencia y medir la calidad de vida relacionada a la salud de los respectivos familiares.Métodos: Estudio transversal y sec...

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“…In the present study, the reason that two-thirds of 10-16 year-old children with thalassemia did not have any problems with regards to sense of well-being may be this matter. Brandow et al (Brandow, Brousseau, Pajewski, & Panepinto, 2010) performed a study on painful event of blocked arteries in patients with cycle of tuberculosis (a chronic disease) and its effect on the well-being of children. They showed that the mean score of health-related quality of life of children at the time of the painful event was lower than 7 days after it.…”

Section: Discussionmentioning

confidence: 99%

Relation between Children’s Well-Being and Family Function in Children with Thalassemia Major in Isfahan in 2013

Keshvari¹,

Ebrahimi²,

Abedi³

2016

GJHS

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The function of every family has a significant impact on the health of its members. Thalassemia is a chronic disease and, as the most common genetic disorder in the world, affects different aspects of life, including emotional well-being. The purpose of this study was to determine the relationship between well-being in children with a Thalassemia major and the function of their families, in Isfahan, Iran, in 2013. This was a cross sectional study and census sampling was used to collect the data. The study sample consisted of 97 children with thalassemia at the age of 10-16 years who referred to the clinic of Imam Reza, Seyed-al-Shohada Hospital in Isfahan. The subjects were evaluated using the Adolescent Psychological Wellbeing Scale and Family Functioning Questionnaire. Data were analyzed using SPSS software. The Pearson correlation coefficient showed that there was a reverse relationship between the overall score of family functioning and illness score of children with thalassemia (r=-0.377, P<0.001). In other words, children with thalassemia who are in families with a higher functionality have a greater sense of well-being. Among the 15 aspects of family functioning, the aspect of expressiveness and Lack of independence had the highest correlation with well-being in children with thalassemia. However, the aspect of locus of control and Disengagement had the lowest correlation with their well-being. The results of this study showed that there is a direct relationship between family functioning and emotional well-being of children with thalassemia major. Therefore, an important task of public health nurses is to improve the function of families in various aspects. The strengthening of family planning and implementation of projects in this regard is also necessary.

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Vaso‐occlusive painful events in sickle cell disease: Impact on child well‐being

Cited by 83 publications

References 26 publications

Impact of hydroxyurea on clinical events in the BABY HUG trial

Impact of hydroxyurea on clinical events in the BABY HUG trial

Qualidade de vida em portadores de doença falciforme

Relation between Children’s Well-Being and Family Function in Children with Thalassemia Major in Isfahan in 2013

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