Abstract
BackgroundThalassaemia is a common public health problem in Malaysia and about 4.5 to 6% of the Malays and Chinese are carriers of this genetic disorder. The major forms of thalassaemia result in death in utero of affected foetuses (α-thalassaemia) or life-long blood transfusions for survival in β-thalassaemia. This study, the first nationwide population based survey of thalassaemia in Malaysia, aimed to determine differences in public awareness, perceptions and attitudes toward thalassaemia in the multi-racial population in Malaysia.MethodsA cross-sectional computer-assisted telephone interview survey of a representative sample of multi-racial Malaysians aged 18 years and above was conducted between July and December 2009.ResultsOf a total of 3723 responding households, 2846 (76.4%) have heard of thalassaemia. Mean knowledge score was 11.85 (SD ± 4.03), out of a maximum of 21, with higher scores indicating better knowledge. Statistically significant differences (P < 0.05) in total knowledge score by age groups, education attainment, employment status, and average household income were observed. Although the majority expressed very positive attitudes toward screening for thalassaemia, only 13.6% of married participants interviewed have been screened for thalassaemia. The majority (63.4%) were unsupportive of selective termination of foetuses diagnosed with thalassaemia major.ConclusionStudy shows that carrier and premarital screening programs for thalassaemia may be more effective and culturally acceptable in the reduction of pregnancies with thalassaemia major. The findings provide insights into culturally congruent educational interventions to reach out diverse socio-demographic and ethnic communities to increase knowledge and cultivate positive attitudes toward prevention of thalassaemia.
Highlights
Thalassaemia is a common public health problem in Malaysia and about 4.5 to 6% of the Malays and Chinese are carriers of this genetic disorder
This study has identified key areas which need to be highlighted and emphasized in any public education and awareness campaigns for thalassaemia screening in Malaysia
Data from this nation-wide survey has pointed out knowledge deficits regarding the genetics and pattern of inheritance of thalassaemia, an integral part of any public educational intervention should be information on the molecular basis of thalassaemia
Summary
Thalassaemia is a common public health problem in Malaysia and about 4.5 to 6% of the Malays and Chinese are carriers of this genetic disorder. Thalassaemia pose an important public health problem in Malaysia. An approximately 4.5% of Malaysians are carriers of b-thalessemia, and the Malaysia is a fast developing country in Southeast Asia with a population of 27.7 million, which encompasses a majority of Malay (50.8%) and other ethnic groups, mainly Chinese (23.0%), indigenous peoples of Sabah and Sarawak (11.0%), Indian (6.9%), and other minority groups making up the remaining 8.3% of the population [4]. The Malays are predominantly Muslim, the Chinese are largely followers of Buddhism, Taoism, and Confucianism, and the majority of the Indian Malaysians are Hindus or Sikhs. Thalassaemia is more prominent among the Malays and Chinese, whereas the Indians form only a small percentage of those with thalassaemia. [5]
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