ArticleHealth and quality of life outcomes2019
Health related quality of life among children with transfusion dependent β-thalassaemia major and haemoglobin E β-thalassaemia in Sri Lanka: a case control study.
Article in Health and quality of life outcomes, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers, 1 of them a synthesis that pooled it.
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Who cites it
23 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A Systematic Review and Meta-Analysis of Stature Growth Complications in β-thalassemia Major Patients.Annals of global health · 2021Pooled it
- A randomised double-blind placebo-controlled clinical trial of oral hydroxyurea for transfusion-dependent β-thalassaemia.Scientific reports · 2022Trial
- Disease Burden in Transfusion-Dependent β-Thalassemia (TDT) Patients and Caregivers in Italy: Results of a Cross-Sectional Descriptive Online Survey.Drugs - real world outcomes · 2026Article
- Generic health-related quality of life instruments among children and adolescents in low- and middle-income countries: a scoping review.Systematic reviews · 2026Article
- Risk Stratification-Based Therapy for Children with E-beta Thalassemia: A 20-Year Follow-Up Study.Indian pediatrics · 2025Article
- Deferoxamine, deferasirox, and deferiprone triple iron chelator combination therapy for transfusion-dependent β-thalassaemia with very high iron overload: a randomised clinical trial.The Lancet regional health. Southeast Asia · 2024Article
- Associations betweenJournal of Taibah University Medical Sciences · 2024Article
- Quality of life and thalassemia in India: A scoping review.Journal of family medicine and primary care · 2024Article
- Health-related quality of life with standard and curative therapies in thalassemia: A narrative literature review.Annals of the New York Academy of Sciences · 2024Review
- Health-Related Quality-of-Life Profile of Pediatric Patients with β Thalassemia after Hematopoietic Stem Cell Transplantation.Journal of clinical medicine · 2023Article
- Association of GDF15 levels with body mass index and endocrine status in β-thalassaemia.Clinical endocrinology · 2023Article
- Efficacy of Hydroxyurea in Transfusion-Dependent Major β-Thalassemia Patients: A Meta-Analysis.Cureus · 2023Review
- Long-Term Health-Related Quality of Life and Clinical Outcomes in Patients with β-Thalassemia after Splenectomy.Journal of clinical medicine · 2023Article
- Article
- Knowledge and practices on childhood anaemia, thalassaemia and iron deficiency among mothers of children aged between 6 and 59 months in a suburban area of Sri Lanka.Journal of health, population, and nutrition · 2022Article
- Review
- Multiplex CRISPR/Cas9 genome editing in hematopoietic stem cells for fetal hemoglobin reinduction generates chromosomal translocations.Molecular therapy. Methods & clinical development · 2021Article
- Association Between Caregivers' Family Management and Quality of Life in Children with Chronic Disease in Southern Thailand.Patient preference and adherence · 2021Article
- Genetic and Epigenetic Therapies for β-Thalassaemia by Altering the Expression of α-Globin Gene.Frontiers in genome editing · 2021Review
- Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major.Journal of religion and health · 2020Article
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Authors and funding
7 authors.
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Abstract
backgroundThalassaemia is a chronic disease without an effective cure in a majority. The clinical management has improved considerably during recent years; however, minimal attempts are made to up lift the quality of life among patients, especially in developing countries. Here we aim to describe and compare and to determine factors associated with health related quality of life among patients with transfusion dependent β-thalassaemia major and haemoglobin E β-thalassemia in Sri Lanka.
methodsA case control study was conducted in the three largest thalassaemia centres of Sri Lanka. All patients with transfusion dependent β-thalassaemia (β-thalassaemia major and haemoglobin E β-thalassaemia) aged 5-18 years were recruited as cases whilst a randomly selected group of children without chronic diseases were recruited as controls. Socio-demographic and clinical data were collected using an interviewer-administered questionnaire and health related quality of life was measured using the validated Paediatric Quality of Life Inventory Version 4.0.
resultsTwo hundred and seventy one patients with transfusion dependent β-thalassaemia (male-49.1%; mean age- 10.9 ± 3.6 years) and 254 controls (male-47.2%; mean age- 10.4 ± 3.5 years) were recruited. Mean health-related quality of life scores were significantly lower in patients compared to controls (72.9 vs. 91.5, p < 0.001). Of the patients, 224 (84%) had β-thalassaemia major and 43 (16%) had haemoglobin E β-thalassaemia. Quality of life scores in psychological health (p < 0.05), emotional functioning (p < 0.05) and social functioning (p < 0.05) were significantly lower in patients with haemoglobin E β-thalassaemia compared to β-thalassaemia major. Splenectomy (p < 0.05), short stature (p < 0.05), under nutrition (p < 0.05) and longer hospital stays (p < 0.05) were significantly associated with lower quality of life scores.
conclusionsDespite improvements in management, the quality of life among patients with β-thalassaemia still remains low. This is more pronounced in the subset of patients with haemoglobin E β-thalassaemia. Splenectomy, short stature, undernutrition and longer hospital stays were significantly associated with poor quality of life. It is timely, even in developing countries, to direct emphasis and to take appropriate steps to improve standards of living and quality of life of patients with β-thalassaemia.
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