Evaluation of health-related quality of life and muscular strength in children with beta thalassemia major

Ismail, Dina K; Eltagui, Mona; Hussein, Zeinab; Eid, Mohamed A.; Aly, Sobhy M.

doi:10.1016/j.ejmhg.2018.04.005

Cited by 10 publications

(12 citation statements)

References 21 publications

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“…The present version of PedsQL scales was designed for measuring the QoL of 8‐ to 12‐year‐old children including 23 questions 25 . The scales are scored on a five‐point response scale as follows: 0 = never a problem, 1 = almost never a problem, 2 = sometimes a problem, 3 = often a problem and 4 = almost always a problem (corresponding to scores of 100, 75, 50, 25 and 0) 26 . The higher score indicates higher QoL, more favourable health level and a higher functioning level.…”

Section: Methodsmentioning

confidence: 99%

“…The higher score indicates higher QoL, more favourable health level and a higher functioning level. A good internal consistency and validity were reported for the PedsQL 4.0 Generic Core Scales tested in a large sample of children with acute and chronic illnesses and normal children and adolescents 26 . The participants’ scores were measured as a subset representative of the comprehensive assessments performed at baseline, post‐treatment (9 meet) and follow‐up (3 months).…”

Section: Methodsmentioning

confidence: 99%

“…25 The scales are scored on a five-point response scale as follows: 0 = never a problem, 1 = almost never a problem, 2 = sometimes a problem, 3 = often a problem and 4 = almost always a problem (corresponding to scores of 100, 75, 50, 25 and 0). 26 The higher score indicates higher QoL, more favourable health level and…”

Section: Data Collectionmentioning

confidence: 99%

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The effectiveness of cognitive‐behavioural therapy on emotional regulation and quality of life in children with Haemophilia

2021

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and Background Data: Haemophilia has known as an inherited bleeding disorder accompanied by remarkable pain, emotional distress, and impaired quality of life (QoL) and emotional regulation. Psychological interventions, such as cognitivebehavioural therapy (CBT), have cost-effectiveness to promote emotional well-being, QoL and emotional regulation; however, they have been scarcely used in the treatment of haemophilia. Objectives of the Study: This research aimed at examining the effect of CBT on emotional regulation and QoL in children with haemophilia using quasi-experimental research with pretest and post-test design and a control group. Method: 30 subjects were selected using convenient sampling and divided into two groups (n = 15). Both groups responded to the QoL questionnaire, the Persian version of the Pediatric Quality of Life Inventory (PedsQL) developed and the Cognitive Emotion Regulation Questionnaire (CERQ-k) in the pretest. The experimental group was then subjected to the CBT intervention through 9 sessions. The analysis of covariance was used for data analysis.Results: There was a significant increase in the QoL and emotion regulation in the experimental group than the control group. Conclusion:The CBT training was effective to stop negative thinking and control their anger at school and also to adopt more appropriate strategies to deal efficaciously with concerns in social situations. Awareness about the thoughts, feelings and behaviours and being able to solve problems enables children to have better social relations and friendships with peers and also in other social situations. It also can increase the QoL and emotion regulation.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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The effectiveness of cognitive‐behavioural therapy on emotional regulation and quality of life in children with Haemophilia

2021

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“…It consists of appropriate forms for ages 2-4, 5-7, 8-12, and 13-18 years. 44,54 ThALI addresses the multidimensionality of QoL, and encompasses different items such as general physical health, coping, body image, appearance and confidence, social relationships, and autonomy. 43 If semi-structured interviews and questionnaires are chosen as a method of assessing the social impact of BT, they must be validated by the…”

Section: Articlementioning

confidence: 99%

Social Impact and Quality of Life of Patients with β-Thalassaemia: A Systematic Review

Greco

Marino

2022

EMJ Hematol

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β-Thalassaemia (BT) is a hereditary genetic blood disease caused by a mutation in the gene that encodes the haemoglobin protein. In the most severe forms, BT forces patients to undergo frequent blood transfusions, which has a significant impact on the quality of life. Classified as rare, BT is very common in the Mediterranean area, and is also found in the Middle East, Central Asia, India, South America, and North Africa. This disease does not currently have a definitive cure, although technological progress and new gene therapies are achieving promising results. This literature review was conducted with the aim to understand how BT affects patients' lives in various social contexts in which they are involved. The authors also aimed to understand which methods are used for this assessment and the possible social actions that can help in the management of the disease. Electronic databases, including PubMed, Scopus, and Web of Science, were used to search for the articles. Related article titles were selected and reduced to the abstracts of the relevant articles, after which the selected full articles were reviewed. The reviewed articles showed consistent agreement in observing that the quality of life of patients with BT is considerably lower compared with the healthy population in terms of physical, emotional, social, and functioning at school. The negative results highlight the significance of the introduction of suitable programmes by healthcare providers, counsellors, and education authorities to provide psychosocial support, and improve academic performance. In addition, genetic counselling and intervention programmes would positively impact the lives of patients with thalassaemia.

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“…Its diagnosis is hypochromic microcytic anemia, either due to reduction or absence in the synthesis of the globin chain in hemoglobin, characterized as alpha or beta Thalassemia 2 . According to the WHO report 150, 000, 00 individuals around the globe are identified with carrier traits of this genetic disorder 3 . The complexity of its physical composition is caused by the imbalance ratio of β-globin, classified into blood transfusion-dependent (TDT) and nontransfusion-dependent (NTDT) BT patients.…”

Section: Introductionmentioning

confidence: 99%

Effect of hydroxyurea on quality of life with a moderating role of healthcare professionals’ performance: A view from the beta-thalassemia patients.

Sheikh

Bibi

Siddiqui

et al. 2022

Int. j. endorsing health sci. res.

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Background: Transfusion-dependent (TDT) β –Thalassemia patients have lower HRQoL than healthy individuals. The impact of Hydroxyurea is always measured with the clinical investigations in terms of laboratory diagnosis. This study aimed to seek out the impact of the drug Hydroxyurea on improving physical health problems of Quality of Life (QoL) of β – Thalassemia patients with the moderating role of healthcare professionals. Methodology: In this research, a deductive approach was adopted whereby hypotheses were originated first, followed by organizing a well-structured questionnaire as a tool for measuring the data. The nature of the research was explanatory and based on primary quantitative data. The data was collected from 290 patients visited in the outpatient and daycare departments of the National Institute of Blood Diseases and Bone Marrow Transplantation Hospital. Results: This study revealed that the impact of Hydroxyurea therapy on improving the physical health problems of Beta Thalassemia is not evident as per the analysis (r=0.079; p=0.178). Similarly, a weak positive non-significant correlation exists between Hydroxyurea therapy and the performance of healthcare professionals in the hospital (r=0.016; p=0.782). Moreover, no significant improvement was observed in physical health problems and health domain of QoL of BT patients by moderating the role of healthcare professional performance (p=0.4471 and 0.4102, respectively). Conclusion: It is concluded that moderating the role of healthcare professionals' performance does not improve the impact of Hydroxyurea on physical health problems and domains of QoL of β – Thalassemia patients.

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Evaluation of health-related quality of life and muscular strength in children with beta thalassemia major

Cited by 10 publications

References 21 publications

The effectiveness of cognitive‐behavioural therapy on emotional regulation and quality of life in children with Haemophilia

The effectiveness of cognitive‐behavioural therapy on emotional regulation and quality of life in children with Haemophilia

Social Impact and Quality of Life of Patients with β-Thalassaemia: A Systematic Review

Effect of hydroxyurea on quality of life with a moderating role of healthcare professionals’ performance: A view from the beta-thalassemia patients.

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