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Local study urges educating students on thalassaemia

09 May 2022

  • Suggests trilingual awareness programmes across all schools
BY Ruwan Laknath Jayakody In order to improve the quality of thalassaemia awareness and screening programmes done in the island, such programmes should be carried out in the Sinhala, Tamil, and English languages, where appropriate, covering all schools, with special attention given to schools with less facilities, so as to educate the young generation on the prevention of thalassaemia, academics observed. Thalassaemias are inherited blood disorders that cause the body to have less haemoglobin (which enables red blood cells to carry oxygen) than normal, and can cause anaemia, leaving one fatigued. These recommendations were made in an original article on the “Knowledge on thalassaemia among students aged 14-17 years in the Kurunegala District (North Western Province)” which was authored by R. Warushahennadi (Consultant Haematologist), A.K.W. Priyadarshani, W.D.G.H. Wanasundara and S.A.M.A.M. Abeysekara (all three are Medical Officers attached to the National Thalassaemia Centre at the Teaching Hospital, Kurunegala) and J.M. Nilam (Consultant Paediatrician attached to the same Hospital) and published in the Sri Lanka Journal of Child Health 50 (2) in June 2021. Thalassaemia, per D.J. Wetherall and J.B. Clegg’s “The thalassaemia syndromes”, is considered the most common, single-gene disorder worldwide, occurring with high frequency, among others, in the Indian subcontinent. Thalassaemia and other haemoglobinopathies are a significant public health problem in 71% of 229 countries worldwide, with over 330,000 affected infants born annually (17% thalassaemias).  An Indian study noted that haemoglobin disorders account for about 3.4% of deaths of children less than five years of age. Globally, there are 269 million carriers of thalassaemia and 150 million of β thalassaemia alone, according to “The evolutionary and clinical implications of the uneven distribution of the frequency of the inherited haemoglobin variants over short geographical distances” by A. Premawardhena, A. Allen, F. Piel, C. Fisher, L. Perera, R. Rodrigo, G. Goonathilaka, L. Ramees, T. Peto, N. Olivieri and D. Weatherall. About 7% of pregnant women carry β or α zero thalassaemia, or clinically significant haemoglobin, and over 1% of couples are at risk of having a thalassaemic baby, per the aforementioned Indian study. In Sri Lanka, the prevalence of thalassaemia, as found in “A nationwide survey of hospital-based thalassaemia patients and standards of care and a preliminary assessment of the national prevention programme in Sri Lanka” by A.P. Premawardhana, R. Mudiyanse, S.T. De Silva, N. Jiffry, U. Nelumdeniya, U. de Silva, S.P. Lamabadusuriya, K. Pushpakumara, R. Dissanayaka, M. Jansz, I. Rifaya, U. Navarathne, V. Thirukumaran, M. Arambepola, W.D. Bandara, U. Vaidyanatha, D. Mendis, K. Weerasekara, N. De Silva, D.K.S. Kumara, S.D. Amarasena, K.K. Hemantha, M.A.C.M. Refai, I. Silva, N. Hameed, F. Rajiyah, S. Mettananda, A. Allen, D.J. Weatherall, and N.F. Oliveri, is higher in the Kurunegala, Anuradhapura, Trincomalee, and Hambantota Districts.  In “Thalassaemia in Sri Lanka: Implications for the future health burden of Asian populations. Sri Lanka Thalassaemia Study Group” by S. de Silva, C.A. Fisher, A. Premawardhena, S.P. Lamabadusuriya, T.E. Peto, G. Perera, J.M. Old, J.B. Clegg, N.F. Olivieri and D.J. Weatherall, 1,774 patients with thalassaemia were identified in 23 different centres in Sri Lanka, and out of them, 68.7% had β thalassaemia major while 20.3% had Hb E/β thalassaemia. Per a Greek study, the management of these disorders requires about 5% of the total health budget. Warushahennadi et al. noted that the prevention and control of thalassaemia in a country needs public education, population screening, genetic counselling and antenatal diagnosis. “In Sri Lanka, antenatal diagnostic facilities are not freely available and the abortion of thalassaemic foetuses is not legalised. Therefore, the only measure to eradicate this genetic disorder is by public education and population screening. Screening individuals before marriage and advising the thalassaemia carriers to choose a non-carrier partner is the current way of prevention practised in Sri Lanka. The national thalassaemia screening programme for school children and young adults (premarital screening) has been in place since 2005. It is important to educate school children on thalassaemia, in order to prevent marriages between carriers, and to reduce future births of thalassaemia major children in Sri Lanka,” Warushahennadi et al. explained. Therefore, Warushahennadi et al. conducted a study to assess the awareness of thalassaemia and to describe the knowledge on thalassaemia among school children aged 14-17 years in the Kurunegala District. The study is a descriptive, cross-sectional study that was conducted during 2017-2018. There are 732 schools in the Kurunegala District. The total number of school children within the 14-17 years age group is 69,665, per the statistics of the Provincial Education office, Kurunegala, as of 2015. Using the probability proportional to size sampling technique, 55 clusters of 30 students in the age range of 14-17 years each were selected from all the schools in the Kurunegala District. A total of 54 schools were sampled (two clusters from one school and one cluster from 53 schools). Within each school, the required number of children was selected randomly. If there were less than 30 students in the age range of 14-17 years in a particular school, all the children in the required age group were included in the study. Schoolchildren within the age group of 14-17 years and were studying and residing in the Kurunegala District were included into the study. Schoolchildren within the selected age group, studying in the Kurunegala District but not residing there, were excluded. The study instrument was a self-administered questionnaire. A total of 1,821 students aged between 14-17 years were selected for the present study. A total of 55 clusters were selected from 54 schools (two clusters multiplied by one school and one cluster multiplied by 54 schools). The study group is predominantly female (59.9%). Of the participants, 57.7% were 14-15-year-olds. The majority (93.6%) were Sinhalese, 5.8% were Muslim, 0.4% were Tamil, and 0.2% were from other ethnicities.  The questionnaire included two parts, demographic data and questions to assess knowledge on thalassaemia (questions included: thalassaemia is inherited from the parents – yes, thalassaemia is a blood-related disease – yes, severe anaemia is the clinical presentation of thalassaemia major – yes, thalassaemia carriers are symptom free – yes, thalassaemia major children need blood transfusion – yes, thalassaemia carriers need blood transfusion – no, thalassaemia carrier status can be diagnosed by a blood test – yes, a marriage between two thalassaemia carriers has a chance of producing a thalassaemia major baby – yes, a marriage between a thalassaemia carrier and a normal individual has a chance of producing a thalassaemia major baby – no, and if one blood relative is diagnosed with thalassaemia, other family members should also be screened – yes). The great majority (92.6%) of the participants had heard of thalassaemia before. The majority (71.1%) correctly stated that thalassaemia is highly prevalent in Kurunegala. The majority (88.3%) knew that thalassaemia is inherited from the parents. A vast majority (91.3%) correctly stated that thalassaemia is a blood-related disease.  Only 30.7% correctly stated that severe anaemia is the clinical presentation of thalassaemia major. A total of 49.4% knew that thalassaemia carriers are symptom free. That thalassaemia major children need blood transfusion was correctly stated by 55%. Only 33% stated that thalassaemia carriers do not need blood transfusions. The great majority (96.5%) correctly stated that thalassaemia can be diagnosed by a blood test. The majority (89.9%) knew that a marriage between two thalassaemia carriers has a chance of producing a thalassaemia major baby. The majority (64%) stated that a marriage between a thalassaemia carrier and a normal individual has no chance of producing a thalassaemia major baby. A greater majority (85.2%) knew that if one blood relative is diagnosed with thalassaemia, other family members should also be screened. Knowledge on thalassaemia was calculated into scores by adding the number of correct answers given to the questions. The study group was divided into two, according to the knowledge score: students with a score of less than 50% (low score) and a score of more than 50% (high score). The majority (83.4%) had a score of over 50%. When these two groups were compared with regard to the demographic data, the age, gender, ethnicity and school type had a significant difference. In the present study, the great majority of participants (92.6%) had heard of thalassaemia. Warushahennadi et al. pointed out that this could be due to the fact that awareness programmes have been conducted in schools in Kurunegala since 2005. In the present study, the majority (83.4%) of students had a high (over 50%) knowledge score and 16.6% had low (less than 50%) knowledge scores. The high level of knowledge reflects a good level of understanding about thalassaemia among the study participants. This may show the success of the awareness programmes that have been done in the district, especially in schools and higher education institutes, since 2005.  The knowledge scores between boys and girls varied significantly: in females, a good knowledge (score over 50%) towards thalassaemia was found in 87.6%, and in males, it was 77.1%. This is in accordance with the findings of another Indian study that found that gender was one of the significant contributing factors of knowledge regarding thalassaemia. Certain other parameters also correlated with knowledge. When Sinhalese participants were compared with other ethnicities, there was a statistically significant difference with regard to knowledge. Age (the age group of 14-15 years was compared with the age group of 16-17 years) and the school type (type one and type two) also showed statistically significant differences with knowledge. In contrast, yet another Indian study found that there was no effect of age, gender, region or socio-economic class on the knowledge of thalassaemia among medical students. Based on the study findings, students aged 14-17 years of the Kurunegala District, showed a satisfactory level of knowledge regarding thalassaemia.


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