Quality of life among thalassaemia children, adolescent and their caregivers

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 affe...

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Main Authors:	Munirah Ismail, Choong, Yin Chun, Noor Aini Mohd Yusoff, Suzana Shahar, Zahara Abdul Manaf, Roslee Rajikan, Zarina Abdul Latiff, Hishamshah Mohd Ibrahim, A. Rahman A. Jamal
Format:	Article
Language:	English
Published:	Universiti Kebangsaan Malaysia 2013
Online Access:	http://journalarticle.ukm.my/5981/ http://journalarticle.ukm.my/5981/ http://journalarticle.ukm.my/5981/1/14%2520Munirah%2520Ismail.pdf

id	ukm-5981
recordtype	eprints
spelling	ukm-59812016-12-14T06:40:01Z http://journalarticle.ukm.my/5981/ Quality of life among thalassaemia children, adolescent and their caregivers Munirah Ismail, Choong, Yin Chun Noor Aini Mohd Yusoff, Suzana Shahar, Zahara Abdul Manaf, Roslee Rajikan, Zarina Abdul Latiff, Hishamshah Mohd Ibrahim, A. Rahman A. Jamal, 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 was affected the most domain. There is a need to improve the QOL of thalassaemic children and their caregivers. Universiti Kebangsaan Malaysia 2013-03 Article PeerReviewed application/pdf en http://journalarticle.ukm.my/5981/1/14%2520Munirah%2520Ismail.pdf Munirah Ismail, and Choong, Yin Chun and Noor Aini Mohd Yusoff, and Suzana Shahar, and Zahara Abdul Manaf, and Roslee Rajikan, and Zarina Abdul Latiff, and Hishamshah Mohd Ibrahim, and A. Rahman A. Jamal, (2013) Quality of life among thalassaemia children, adolescent and their caregivers. Sains Malaysiana, 42 (3). pp. 373-380. ISSN 0126-6039 http://www.ukm.my/jsm/
repository_type	Digital Repository
institution_category	Local University
institution	Universiti Kebangasaan Malaysia
building	UKM Institutional Repository
collection	Online Access
language	English
description	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 was affected the most domain. There is a need to improve the QOL of thalassaemic children and their caregivers.
format	Article
author	Munirah Ismail, Choong, Yin Chun Noor Aini Mohd Yusoff, Suzana Shahar, Zahara Abdul Manaf, Roslee Rajikan, Zarina Abdul Latiff, Hishamshah Mohd Ibrahim, A. Rahman A. Jamal,
spellingShingle	Munirah Ismail, Choong, Yin Chun Noor Aini Mohd Yusoff, Suzana Shahar, Zahara Abdul Manaf, Roslee Rajikan, Zarina Abdul Latiff, Hishamshah Mohd Ibrahim, A. Rahman A. Jamal, Quality of life among thalassaemia children, adolescent and their caregivers
author_facet	Munirah Ismail, Choong, Yin Chun Noor Aini Mohd Yusoff, Suzana Shahar, Zahara Abdul Manaf, Roslee Rajikan, Zarina Abdul Latiff, Hishamshah Mohd Ibrahim, A. Rahman A. Jamal,
author_sort	Munirah Ismail,
title	Quality of life among thalassaemia children, adolescent and their caregivers
title_short	Quality of life among thalassaemia children, adolescent and their caregivers
title_full	Quality of life among thalassaemia children, adolescent and their caregivers
title_fullStr	Quality of life among thalassaemia children, adolescent and their caregivers
title_full_unstemmed	Quality of life among thalassaemia children, adolescent and their caregivers
title_sort	quality of life among thalassaemia children, adolescent and their caregivers
publisher	Universiti Kebangsaan Malaysia
publishDate	2013
url	http://journalarticle.ukm.my/5981/ http://journalarticle.ukm.my/5981/ http://journalarticle.ukm.my/5981/1/14%2520Munirah%2520Ismail.pdf
first_indexed	2023-09-18T19:45:40Z
last_indexed	2023-09-18T19:45:40Z
_version_	1777405883082342400

Quality of life among thalassaemia children, adolescent and their caregivers

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