Quality of life among thalassaemia children, adolescent and their caregivers

Munirah Ismail, Choong Yin Chun, Suzana Shahar, Zahara Abdul Manaf, Roslee Rajikan, Noor Aini Mohd Yusoff, Zarina Abdul Latiff, Hishamshah Mohd Ibrahim, A. Rahman A. Jamal

Research output: Contribution to journalArticle

4 Citations (Scopus)

Abstract

In thalassaemic patients, the impact of the disease especially on quality of life (QOL) of the caregivers in Malaysia has not been established. This study was conducted to assess the health-related quality of life (HRQOL) of thalassaemia patients and their caregivers in order to explore factors affecting their QOL. A cross-sectional study was conducted on 75 thalassaemic children and adolescents aged between 7 and 18 years old and their caregivers. The PedsQLTM 4.0 generic core scales questionnaire was administered to both thalassaemic children and their caregivers while the health questionnaire EQ 5D was given to caregivers only. The subjects were recruited from Hospital Kuala Lumpur (HKL) and Universiti Kebangsaan Malaysia Medical Centre (UKMMC). The results revealed that the mean of psychosocial HRQOL score in patients (63.91±14.65) was significantly lower than parent proxy reports (67.14±10.48) (p=0.008). The school functioning score (50.59±15.31) was the lowest of the psychosocial measure, followed by emotional functioning (59.92±16.83) and social functioning (78.01±13.92) score. The patients' pre-transfusion haemoglobin concentration was significantly associated with their QOL (p=0.02). Having more children, higher numbers of thalassaemic children and lower educational level of caregivers were associated with poorer QOL. In conclusion, caregivers underestimated the QOL of their thalassaemic children. The school functioning domain was affected the most domain. There is a need to improve the QOL of thalassaemic children and their caregivers.

Original languageEnglish
Pages (from-to)373-380
Number of pages8
JournalSains Malaysiana
Volume42
Issue number3
Publication statusPublished - Mar 2013

Fingerprint

Thalassemia
Caregivers
Quality of Life
Malaysia
Proxy
Hemoglobins
Cross-Sectional Studies
Health

Keywords

  • Caregivers
  • Education
  • Paediatrics
  • Quality of life
  • Thalassemia

ASJC Scopus subject areas

  • General

Cite this

Quality of life among thalassaemia children, adolescent and their caregivers. / Ismail, Munirah; Chun, Choong Yin; Shahar, Suzana; Abdul Manaf, Zahara; Rajikan, Roslee; Mohd Yusoff, Noor Aini; Abdul Latiff, Zarina; Ibrahim, Hishamshah Mohd; A. Jamal, A. Rahman.

In: Sains Malaysiana, Vol. 42, No. 3, 03.2013, p. 373-380.

Research output: Contribution to journalArticle

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