Health-related quality of life (HRQoL) in beta-thalassemia major (β-TM) patients assessed by 36-item short form health survey (SF-36): a meta-analysis

Arian, Mahdieh; Mirmohammadkhani, Majid; Ghorbani, Raheb; Soleimani, Mohsen

doi:10.1007/s11136-018-1986-1

Cited by 58 publications

(56 citation statements)

References 43 publications

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“…As expected and reported before [20,31,32], our results show that higher pretransfusion haemoglobin levels and lower hepatic and splenic sizes are associated with better HRQoL scores. Similarly, longer duration of hospital stay for transfusion and increasing distance to travel from home to hospital were both correlated with lower HRQoL scores.…”

Section: Discussionsupporting

confidence: 91%

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

Mettananda

Pathiraja

Peiris

et al. 2019

Health Qual Life Outcomes

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Background Thalassaemia 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. Methods A 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. Results Two 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. Conclusions Despite 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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Section: Discussionsupporting

confidence: 91%

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

Mettananda

Pathiraja

Peiris

et al. 2019

Health Qual Life Outcomes

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“…HRQoL surveys of children with TDT have been carried out in Malaysia [7][8][9], Thailand [10][11][12], India [13][14][15] and the Middle East [16][17][18][19][20]. Although the principles of treatment are similar, HRQoL outcomes are heavily influenced by experiences, beliefs, expectations, cultural differences and access to health care [21], justifying the need for local studies.…”

Section: Introductionmentioning

confidence: 99%

Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in Malaysia

Shafie

Chhabra

Wong

et al. 2020

Health Qual Life Outcomes

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Background: The treatment of children with transfusion-dependent thalassemia (TDT) in Malaysia has progressed since 2005. This study provides an updated health-related quality of life (HRQoL) assessment for children with the disorder and the factors affecting the HRQoL. Methods: A cross-sectional HRQoL survey of Malaysian children with TDT was conducted using the PedsQL™ 4.0 Generic Core Scales. Patients with non-transfusion dependent thalassemia and other haemoglobinopathies were excluded. Parent-proxy and self-reported HRQoL scores were obtained using a multi-stage convenient sampling. The relationship between HRQoL scores and demographic factors were tested using association, correlation and regression analysis. Results: A total of 368 patients were recruited. The mean (SD) Total Summary Score (TSS) was 80.12(13.87). Predictors for a lower TSS was an increasing age group and the use of dual chelating agents (R 2 = 0.057, F (4, 359) = 5.40, p = < 0.001). The mean (SD) Physical Health Summary Score (PHSS) was 82.21 (16.82). Predictors of a higher PHSS score was being male, while predictors of a lower score was an increasing age group and parentproxy reports(R 2 = 0.075, F (5,358) = 5.80, p = < 0.001). The mean (SD) Psychosocial Health Summary Score (PCHS) was 79.39 (14.81). Predictors for a lower PCHS was the use of dual chelating agents(R 2 = 0.041, F (1, 362) = 15.60, p = < 0.001). The school functioning score had the lowest mean (SD) score of 69.52(20.92) in the psychosocial dimension. Conclusion: The HRQoL of TDT children in Malaysia has improved over the last decade owing to the better access in treatment. However, further effort is needed to improve the school functioning dimension.

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“…A meta-analysis of 26 studies in which thalassemic children were targeted concluded that thalassemia adversely affects health-related quality of life of these children. Furthermore, quality of life should be considered as an essential part of overall health assessment of these patients [18] .…”

Section: Discussionmentioning

confidence: 99%

Assessment of Quality of life Among Children with Cancer, Children Undergoing Hemodialysis and Children with Thalassemia: A Comparative Study

Afifi¹,

Khamis²,

Baraka³

et al. 2020

Preprint

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Purpose This study aims to evaluate health-related quality of life among children with different chronic conditions and make a comparison among them. In addition, the study will draw a comparison between children’s perspective about their quality of life and parents’ perspective. Furthermore, the study will address the associations between quality of life with disease severity, duration and the presence of other co-morbidities. Methods This was a prospective, analytical, correlational study design in which Pediatric Quality of Life Inventory (PedsQL 4.0 generic core scale) was administered to assess quality of life on 110 children; 50 children with cancer, 30 children with thalassemia and 30 children undergoing hemodialysis. Researchers interviewed children as well as their parents. Results Results showed that children with Thalassemia had the lowest scores and suffered from poor quality of life compared to the other two groups of children. Interestingly, quality of life level among children undergoing dialysis was lower than children with cancer. However, there were marked discrepancy between child’s and parents’ answers on scale questions. The level of quality of life, in all children, were statistically significant in relation with family size, income and parents’ education. Conclusion We identified high prevalence of poor level of health-related quality of life among children included in this study. The findings support that the quality of life among children with chronic conditions should receive more attention in our local medical settings.

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Health-related quality of life (HRQoL) in beta-thalassemia major (β-TM) patients assessed by 36-item short form health survey (SF-36): a meta-analysis

Abstract: BTM could adversely affect the HRQoL of patients. Measuring HRQoL should be considered as an essential part of the overall assessment of health status of BTM patients, which would provide valuable clues for improving the management of disease and making decisions on the treatment.

Cited by 58 publications

References 43 publications

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

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

Health-related quality of life among children with transfusion-dependent thalassemia: A cross-sectional study in Malaysia

Assessment of Quality of life Among Children with Cancer, Children Undergoing Hemodialysis and Children with Thalassemia: A Comparative Study

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