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ABSTRACT
Thalassaemia is a hereditary disorder which results in reduced production of haemoglobin. This disease is a major
public health problem. It was reported from Malaysia in 2011 that there were nearly 4,800 registered
thalassaemics. The current study was carried out to determine the level of awareness on thalassaemia among the
students of Royal College of Medicine Perak, University Kuala Lumpur, Ipoh, Malaysia. This is a cross-sectional
study. Students were then distributed a pretested questionnaire about thalassaemia. The results were analyzed using
SPSS 17.0. Out of 281 students, 41%, 41% and 18% were pharmacy students, MBBS students and nursing students
respectively. Most (72%) of the respondents were female. The mean knowledge score of nursing students was
highest 5.39±1.51, out of a maximum of 7, compared to MBBS students 5.18±1.15 and pharmacy students
3.76±1.57. However, the mean attitude score of nursing (2.98±1.14) and MBBS (2.98±1.26) students was h ighest
and same out of maximum of 5, but not much different compared to pharmacy students 2.69±1.25. Male stu dents
had higher level of knowledge on thalassaemia compared to female students. However, female students possessed
better attitude when compared to male students. Only 8 students (3%) had an excellent knowledge and attitude.
Most of them showed high knowledge level but lack of attitude. Although, current study population level of
knowledge is not directly proportional to level of attitude. Since Malaysia is a multiracial country with different
cultural and religious believe should be carefully taken into consideration for the prevention of thalassaemia.
INTRODUCTION
“The term thalassemia is derived from the Greek, thalassa (sea) and haima (blood)” [1]. Thalassaemia is a red blood
cell (RBC) hereditary autosomal recessive disorder which involves the lack of or faults in genes accountable for
construction of haemoglobin [2]. Thalassemia is a major public health delinquent in Malaysia. About 4% of
Malaysian national are carriers [3-4]. But global carriers’ rate is about 7% [5-6]. Although there are enormous
development regarding molecular understanding about inherited disorders of haemoglobin still lot of children die
from haemoglobinopathies due to lack of appropriate care [5-6]. “The thalassaemias are a group of inherited
disorders of haemoglobin, first reported independently from the United States and Italy in 1925. The word
thalassaemia, derived from Greek roots for the sea and blood, was invented under the mistaken belief that these
disorders were confined to the Mediterranean region” [7].
Hereditary disorders of haemoglobin fall into two main groups: the structural haemoglobin variants and the
thalassaemias. The structural haemoglobin variants mostly result from single amino-acid substitutions in α or β
chains [8]. The thalassaemias are categorized according to the specific globin chains that are vainly made into α, β,
δβ, and εδβ thalassaemias [9-10]. Alpha and β thalassaemias are more common with life threatening potential according to public health point of view[9-10]. In beta thalassaemia there is either reduced or not at all production of
the “beta globin chains of the haemoglobin tetramer” [11]. Beta thalassaemia can be further divided into three, beta
thalassaemia minor, intermediate and major [11-13]. Beta thalassaemia minor is very often called as betathalassemia
trait and the patients have mild symptoms even remain clinically asymptomatic with mild anaemia. The
intermediate one causes moderate anaemia but the thalassaemia major has fatal anaemia [12]. Majority of the
intermediate group are of moderate severity and usually do not need blood transfusion [14]. Two genes are involved
in making the beta haemoglobin chain but only one gene will affected in minor and these individuals are carriers
[12,15]. In β-thalassemia intermedia or major (Cooley's anemia), both the genes possess anomaly. β-thalassaemia
major is the most severe form and results from the inheritance of the homozygous state for the phenotype [16].
Paediatric patients of thalassaemias present as early as 3 months. Patients become increasingly “pale, difficulty in
feeding and irritable” [17]. These patients even have substantial “hepatosplenomegaly due to haemolysis and extra
medullary haematopoiesis”[17]. At this stage urgent medical intervention is absolutely necessary for prevention of
a number complications [17].
Thalassaemia is one of the most common genetic blood disorders in the world [1,18]. Congenital haemoglobin
disorders are unique physiognomies of tropical and sub-tropical countries but now has become a global problem
because of massive immigration of people from one country to another [1,6,18-19]. Beta-thalassemia is most
prevalent in Mediterranean countries, the Middle East, Central Asia, India, Southern China, and the Far East as well
as countries along the north coast of Africa and in South America. The highest carrier frequency is reported in
Cyprus (14%), Sardinia (10.3%), and Southeast Asia [6,20-21]. There are approximately 240 million people
worldwide who are heterozygous for β-thalassaemia and approximately 200,000 affected homozygotes are born
annually [22]. Asia and Middle Eastern regions account for 95% of thalassaemia births [23]. Three hundred
thousands to 500,000 children with severe forms of such sicknesses are born each year [24]. The countries largely
affected are those in the Mediterranean, such as Italy, Greece and Cyprus and in Asia countries like China, India and
countries in South East Asia as well as Malaysia [25-27].
Malaysia has diverse multicultural and multi-ethnic inhabitants of 28.3 million, consisting of 65.1% Malays and
other Bumiputera groups, 26% Chinese, 7.7% Indians, and 1.2% of other ethnic groups [28]. Thalassaemia is the
commonest single gene inherited blood disorder in Malaysia [29]. β -thalassemia affected child births per annum are
assessed at 2.1 per 1,000 with an appraised 5,600 patients with transfusion reliant on β-thalassemia in Malaysia [3].
There have been very few published studies on the awareness of thalassaemia among University students. The
dearth in research on awareness of thalassaemia has led to this study, which was conducted with the objective to
determine the level of thalassemia awareness among the students of University Kuala Lumpur-Royal College of
Medical Perak (UniKL-RCMP).
EXPERIMENTAL SECTION
This was a cross-sectional descriptive study towards the knowledge and attitude about thalassaemia. The study
population was Year I and II medical, pharmacy and nursing students of University Kuala Lumpur Royal College of
Medicine Perak (UniKL-RCMP). Using the built in STATCALC of the Epi Info statistical software version 3.3.2,
the sample was calculated on a population size of 933, with worst acceptable value of 5% that gave a minimum
sample size of 272 at 95% confidence level. Convenience sampling technique was used. A total of 300
questionnaires were distributed to the students. Target students were informed about the study and their consent was
taken in a consent form. The questionnaires were pretested on several pupil of this University and validated.
Questionnaires were distributed among students for response. It consisted of 18 questions related to the sociodemographic
data, and knowledge and attitude towards thalassaemia. Medical and pharmacy students (Year I and II)
as well as nursing students (Year I, II, and III) who agreed to participate were included in this study.
The questionnaire comprised of 18 questions, divided into 3 parts. Firstly, demographic questions [6-item) were
asked. The second part, participants' knowledge about thalassaemia was assessed across several domains: 1) general
knowledge of thalassaemia (2-item); 2) knowledge of thalassaemia diagnosis (1-item); 3) knowledge of thalassaemia
treatment (1-item); 4) knowledge of thalassemia prognosis (3-item). For each question, “I know” response was given
a score of one, and “I don't know” was scored as zero, for a total possible score of 0-7, with higher scores indicating
better knowledge. There was a band for the score, if the participant answers all the 7 questions “I know” (100%) the
knowledge level was assessed as “Excellent”. If the participants answer 5 to 6 questions “I know” (>71% - <100%)
the knowledge level was “Good”, 3 to 4 “I know” answers (>28% - 71%) was “Average” knowledge level and if
there were less than 3 “I know” answers (<28%) the knowledge level was assessed as “Poor”.
The third part assessed attitudes toward thalassaemia (5-item), where participants were asked for their views on
premarital screening, marriage between individuals who are both carriers, pregnancy of carrier couples, termination of pregnancies affected with thalassaemia major and role of mass media to educate people about thalassaemia. For
each question, an agree response was given a score of one, and disagree response was scored as zero, for a total
possible score of 0-5. There was a band for the score, if the participants agreed with all the 5 questions (100%) the
attitude was assessed as “Excellent”. If the participants agree with 4 questions (80%) the attitude was “Good”, 3
agree answer (60%) was “Average” attitude and if there were less than 3 agree answers (<60%) the attitude was
assessed as “Poor”.
Data was analysed using SPSS 17.0 for Windows. Values of P < 0.05 were considered significant. The chi-square
test was used to test the significance of differences in percentages. Descriptive statistics such as mean, mode and
standard deviation were generated as well.
DISCUSSION
The knowledge level of the current study population (around 90%) was quite good which is much higher than that of
a study done recently in Pakistani [30]. In that study, nearly half of the medical university student never heard about
thalassemia whereas Malaysian villagers (47%) also know about thalassemia [27]. In another study using telephonic
interview 77% of Malaysian population knows about thalassemia even of its’ genetic origin [13]. Majority of the
Malay population in this study showed their knowledge level high which could be because they were the students of
a medical campus.
The mean knowledge score compared between three different courses showed that pharmacy students had the lowest
3.76 out of a possible score of 7 that reflected a lack of knowledge among the study respondents. This could be due
to the 23.1% of the respondents from pharmacy course are in the 1st year with SPM (Sijil Pelajaran Malaysia, the
Malaysian Certificate of Education, is a national examination taken by all fifth-year secondary school students in
Malaysia, equivalent to eleventh grade in American's K-12 education) as the level of their education. They might not
really know what thalassemia is and might not have strong knowledge regarding thalassaemia.
Participants’ responses indicated that their specific knowledge regarding the treatment and prognosis of the disease,
and its pattern of inheritance was poor. However, as compared to the study on public perceptions and attitude
towards thalassaemia done in 2011 [13], UniKL-RCMP students had better knowledge on thalassaemia as perhaps
they are future health care providers. Judging by the result of the knowledge of the respondents, more awareness
programs should be directed to the target group of student to provide them with the information they need to know
about thalassaemia so that they realise the importance of thalassaemia awareness. The Pearson correlation between
the age of the students and their attitude level showed perfect positive correlation, and was considered significant
since the P value (P<0.05) was 0.043.
The Pearson correlation found statistically significant (p=0.043) positive correlation between the age of the students
and their attitude. Therefore, current study revealed that as the student’s age increases, their attitude awareness
towards thalassemia also increases. This is proven by the attitude level of the third year students of Nursing and
second year students of MBBS. These groups of students were among 20-25 year old. The mean attitude score of
nursing and MBBS students was highest and same 2.98 (SD ± 1.14, SD ± 1.26), out of maximum of 5.
CONCLUSION
In conclusion, level of knowledge is not directly proportional to the level of attitude. A student who has high level of
knowledge not necessarily has high level of attitude. The mass media is greatly encouraged to make more programs
such as films, dramas and talk shows to help increase the attitude by showing the real patients who suffer from this
disorder. Besides, the Health Ministry can make the screening test for thalassaemia a compulsory for every student
so that at least they know why they learn this type of blood disorder.
Acknowledgement
We are much grateful to those students who participated in the study. Authors are much obliged to the Dean of The
Faculty of Medicine, University Kuala Lumpur-Royal College of Medical Perak, Malaysia. Authors are much
grateful Dr. Md Zakirul Islam, Associate Professor, Department of Pharmacology and Therapeutics, Eastern
Medical College, Comilla, Bangladesh for his kind help in the development of the manuscript.