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

Shafie AA 1 , Chhabra IK 2 , Wong JHY 2 , Mohammed NS 2 , Ibrahim HM 3 , Alias H 4

Affiliations 

  • 1 Discipline of Social & Administrative Pharmacy, School of Pharmaceutical Science, Universiti Sains Malaysia, Minden, 11800, Pulau Pinang, Malaysia. aakmal@usm.my
  • 2 Discipline of Social & Administrative Pharmacy, School of Pharmaceutical Science, Universiti Sains Malaysia, Minden, 11800, Pulau Pinang, Malaysia
  • 3 Tunku Azizah Hospital Kuala Lumpur, Ministry of Health Malaysia, Jalan Raja Muda Abdul Aziz, 50300, Wilayah Persekutuan Kuala Lumpur, Malaysia
  • 4 Paediatric Haematology and Oncology Unit, Department of Paediatrics, UKM Medical Centre, Faculty of Medicine, The National University of Malaysia, Wilayah Persekutuan Kuala Lumpur, Malaysia
Health Qual Life Outcomes, 2020 May 14;18(1):141.
PMID: 32408899 DOI: 10.1186/s12955-020-01381-5

Abstract

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 (R2 = 0.057, F (4, 359) = 5.40, p = 

* Title and MeSH Headings from MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine.

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