Sains Malaysiana 42(3)(2013): 373–380
Quality
of Life Among Thalassaemia Children, Adolescent and Their Caregivers
(Kualiti Hidup Pesakit
Talasemia Kanak-Kanak dan Remaja serta Penjaga Mereka)
Munirah Ismail1*, Choong Yin
Chun1, Noor Aini Mohd Yusoff2, Suzana Shahar1,
Zahara Abdul Manaf1, Roslee Rajikan1, Zarina Abdul Latiff3,
Hishamshah Mohd Ibrahim4 & A. Rahman A. Jamal5
1Dietetics Programme, School of Health
Care Sciences, Faculty of Health Sciences
Universiti
Kebangsaan Malaysia, Jalan Raja Muda Abdul Aziz,
50300 Kuala
Lumpur, Malaysia
2ASIA Metropolitan University, No. 14,
Jalan 19/1, Seksyen 19, 46300 Petaling Jaya, Selangor, Malaysia
3Department of Paediatric, Faculty of Medicine, Universiti
Kebangsaan Malaysia,
UKM Medical Centre, Jalan Ya’acob Latif,
Bandar Tun Razak, 56000 Kuala Lumpur.
Malaysia
4Paediatrics Department, Paediatric Institute, Hospital Kuala
Lumpur, Jalan Pahang
50586 Kuala Lumpur, Malaysia
5UKM Medical Molecular Biology Institute (UMBI), UKM Medical
Centre, Jalan Yaacob Latif
56000 Bandar Tun Razak, Kuala Lumpur, Malaysia
Diserahkan: 1 Disember 2011/Diterima 15
Oktober 2012
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 was
affected the most domain. There is a need to improve the QOL of thalassaemic
children and their caregivers.
Keywords: Caregivers; education; paediatrics; quality of life;
thalassemia
ABSTRAK
Bagi pesakit talasemia, kesan penyakit terutamanya ke atas kualiti
hidup penjaga mereka di Malaysia masih belum difahami. Penyelidikan
ini telah dijalankan untuk menilai kualiti hidup berkaitan kesihatan (HRQOL)
dalam kalangan pesakit talasemia serta penjaga mereka bagi mengetahui
faktor-faktor yang mempengaruhi kualiti hidup mereka. Kajian keratan
lintang telah dijalankan ke atas 75 pesakit talasemia kanak-kanak dan remaja
berumur antara 7 dan 18 tahun serta penjaga mereka. Borang soal-selidik PedsQLTM 4.0
generic core scales telah diberikan kepada pesakit dan penjaga sementara borang
soal-selidik kesihatan EQ 5D diberikan kepada penjaga sahaja. Subjek direkrut dari Hospital Kuala Lumpur (HKL) dan Pusat Perubatan
Universiti Kebangsaan Malaysia (PPUKM). Keputusan menunjukkan min skor HRQOL psikososial
dalam kalangan pesakit (63.91±14.65) adalah lebih rendah secara signifikan
berbanding laporan proksi penjaga (67.14±10.48) (p=0.008). Skor
fungsian sekolah (50.59±15.31) adalah paling rendah antara pengukuran
psikososial, diikuti skor fungsian emosi (59.92±16.83) dan fungsian sosial
(78.01±13.92). Kepekatan hemoglobin pra-transfusi berkait secara
signifikan dengan kualiti hidup mereka (p=0.02). Anak yang lebih ramai, jumlah
anak yang menghidap talasemia yang lebih ramai serta tahap pendidikan penjaga
yang rendah dikaitkan dengan kualiti hidup yang kurang memuaskan. Kesimpulannya, penjaga didapati memandang rendah isu kualiti hidup
anak-anak talasemia mereka. Domain fungsian sekolah
didapati paling bermasalah. Oleh itu, terdapat keperluan untuk
meningkatkan kualiti hidup pesakit talasemia kanak-kanak dan remaja serta
penjaga mereka.
Kata kunci: Kualiti hidup; pediatrik;
pendidikan; penjaga; talasemia
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*Pengarang untuk surat-menyurat; email: munirah.bt.ismail@gmail.com
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