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

Received: 1 December 2011/Accepted: 15 October 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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*Corresponding author; email: munirah.bt.ismail@gmail.com