Symptomatic management remains the primary treatment approach, leading to an unavoidable escalation in costs. While the eventual availability of stem cell transplantation as a potential cure holds promise, it is improbable that most affected individuals will have access to this service because of financial constraints. The optimal strategy for thalassemia control involves averting the emergence of new cases, necessitating mandatory screening of carriers. Thalassemia screening can be implemented on a voluntary or mandatory basis, either before or after marriage, as well as before or after conception. Certain nations, including Cyprus, Iran, Saudi Arabia, and Palestinian territories, have embraced compulsory screening, resulting in nearly universal coverage. In contrast, other countries have opted for voluntary screening according to the guidelines outlined by the World Health Organization (WHO) 11.
Across all nations, the implementation of thalassemia screening has played a pivotal role in diminishing the occurrence of β-thalassemia. Carrying out carrier screening constitutes a fundamental intervention in these comprehensive preventive initiatives in every country 42,44. The findings of this study revealed the knowledge, attitudes, practices towards thalassemia, opinions regarding the concept of “safe marriage” and premarital screening among Bangladeshi university students.
Thalassemia is a major public health concern in Bangladesh because of the heavy burden of suffering on families and the large financial costs to health services. The study included 853 university students, primarily female (54%) and unmarried (92%), with the majority having a scientific background (75%). The distribution of students across academic years, economic status, and university type also varied significantly. The predominance of female participants in the study might reflect gender distribution in the university or genuine gender-based interest in health-related topics. This finding shows the importance of tailoring awareness campaigns to reach both male and female students effectively. The high percentage of unmarried participants suggests that this study primarily focused on younger individuals who may not have family related experiences with thalassemia. However, these characteristics are crucial for prevention efforts, as they represent the future generations of parents. A substantial proportion of participants (92%) in this study acknowledged their familiarity with thalassemia. This level of awareness appears comparatively satisfactory when compared with findings from other countries with prevalent thalassemia cases, such as Saudi Arabia (48%) 45, Oman (55.3%) 46, Turkey (58%) 47, Bahrain (65%) 47, Pakistan (75.2%) 48, Italy (85%) 49, Malaysia (87.15%) 50, and Greece (93%) 51. This observation highlights a significant level of thalassemia awareness among study participants within the context of Bangladesh.
Academic textbooks (40.84%) and online news portals (14.24%) were the primary sources of thalassemia information. Healthcare professionals, friends, family members, thalassemia patients, seminars, television, and miscellaneous sources also contributed to thalassemia awareness. The sources of information about thalassemia, as identified in this study, provide valuable insights into how individuals acquire knowledge about this inherited blood disorder. These findings shed light on the channels through which thalassemia awareness is disseminated and can inform targeted educational strategies and public health initiatives.
In this study, a noteworthy majority of the respondents (40.84%) identified academic textbooks as the prevailing and prominent information source regarding thalassemia. Similar findings have been reported in previous studies in Bangladesh 20,52. The dissemination of awareness regarding thalassemia saw limited contributions from sources, such as family, friends, healthcare practitioners, online news portals, individuals with thalassemia, seminars, television, and other channels. Another study in Oman showed that students knew about premarital screening mostly through school (36%) and less from healthcare practitioners (31%) 53. In contrast, Wong et al. reported that the majority of respondents (83.35%) mentioned mass media as their primary source of information, with healthcare practitioners as a minor source (8.9%) 45. Another study among management university students in Pakistan found that the majority of respondents heard about thalassemia from relatives and friends (42%) or electronic media (26%), and (19%) cited public health awareness campaigns 54. Approximately (24.8%) of respondents reported family and friends as a source of information, similar to the findings of an Italian study 49. Another study in Bangladesh among university students reported that the main sources of information for thalassemia were electronic media (41.41%), friends and relatives (41.80%) 18. These findings indicate the need to promote public awareness programs in Bangladesh.
Knowledge of thalassemia varied among participants. Factors significantly associated with higher knowledge levels included being female, living in urban areas, studying in government institutions, pursuing scientific disciplines, and being in the 3rd or 4th year of study. Middle-class students also exhibited higher knowledge than did lower- and upper-economic-class students. These results were consistent with the study from Kolkata, Bahrain and another study from Bangladesh 6,52,55.
The study identified a statistical significance between students’ fields of study and their knowledge of thalassemia. Students from science backgrounds showed a good figure in knowledge, while the knowledge aspect of thalassemia among business, social science, and arts background students was alarming. This indicates that there are gaps in Bangladesh’s health education systems. Community-based education programs can be implemented to address knowledge gaps 49. In a study of Jordan, no significant differences in knowledge were found among the students from different groups, and they mentioned “mass media” which shape the knowledge of the students from different backgrounds 56. Therefore, using mass media for health education and promotion could be an effective way to reduce knowledge gaps.
Science students displayed the highest knowledge levels, while arts, humanities, business, and social science students had relatively less knowledge of thalassemia. Differences in knowledge across disciplines were statistically significant. Science students exhibited the highest knowledge levels, emphasizing the importance of integrating thalassemia education into curricula, particularly for non-science disciplines. Efforts should be made to bridge the knowledge gap among students in the arts, humanities, business, and social sciences.
In our study, 86% of students from a science background possessed knowledge of the inheritance of thalassemia, which is relatively higher than that in other fields of study. A similar finding was reported in a study in Bangladesh, where 32.8% of students from a scientific background possessed knowledge of inherency regarding thalassemia, which was the highest among other backgrounds. A significant proportion of students from both science (89%) and arts and humanities (75%) backgrounds exhibited a clear understanding that thalassemia is not contagious. In contrast, a study in Bangladesh revealed that only (2.5%) of science students and 52% of arts and humanities students have knowledge about the non-contagious nature of thalassemia. In terms of consanguineous marriage being a significant risk factor for thalassemia, along with thalassemia’s preventability and curability, our study found that science background students exhibit the highest level of knowledge than arts and humanities and business studies background students, which is consistent with another study 20. These differences could potentially be attributed to curriculum-related discrepancies in the educational institutions in Bangladesh.
Participants showed a mix of positive attitudes, reservations, and willingness to engage in activities that promote understanding and prevention of thalassemia. Most patients were willing to undergo thalassemia screening and donate blood to patients with thalassemia. They supported premarital screening, sought professional advice, and participated in thalassemia prevention programs. The positive attitudes and willingness of participants to engage in thalassemia awareness and prevention activities suggest that educational campaigns and public health initiatives can be effective. Encouraging blood donation, supporting premarital screening, and raising awareness of thalassemia are key strategies.
A significant proportion of students (83%) agreed on premarital screening (PMS) for thalassemia, which is consistent with other studies conducted among students and young adults in Yemen (92%), Indonesia (83.3%), and Jordan (87.8%) 56–58. The presence of these positive attitudes and perceptions indicates that participants may be inclined to perform premarital screening tests in the future. Another positive outcome of this research was that 70% of the participants demonstrated a positive willingness to donate blood to patients with thalassemia. However, this was less than that reported in other studies conducted in Bangladesh (85.3%) and Pakistan (87.4%) 52,59. Only 29% of the respondents in our study agreed with a thalassemia patient, whereas it was 50% in a study conducted among medical students in Yemen 57. This is because medical students have specialized knowledge and a better understanding of being empathetic toward individuals affected by thalassemia. In terms of consanguineous marriage, 64% of the participants in our study agreed not to prefer consanguineous marriage, which is lower than that of Pakistani medical students (83%) 59. Seventy percent of the participants in our study believed that carriers should not marry, indicating their awareness of the potential risks associated with thalassemia. In pregnant carriers, 37% of the participants agreed that they should refrain from having children. The importance of seeking professional advice for thalassemia (81%). Participants also showed a keen interest in participating in the "Thalassemia Prevention Programm" if introduced, with 79% agreeing to participate. Furthermore, most participants (88%) desired more information about thalassemia, indicating a willingness to enhance their knowledge.
After completing the survey, a significant proportion of the participants (85%) expressed their intention to share information about thalassemia with their friends, highlighting their willingness to raise awareness about the condition. The attitudes displayed by the participants in this study towards thalassemia awareness and related aspects signify a mix of positive attitudes, reservations, and an overall willingness to engage in activities that promote understanding and prevention of the condition.
Most participants favored making thalassemia screening compulsory and implementing voluntary screening. They believed that screening should occur during school and before marriage. This shows the importance of accessible and affordable screening programs to identify carriers and prevent the birth of children with thalassemia.
The high incidence of the disease makes thalassemia preventive efforts very important, and screening and premarital counselling are often used as the foundation of prevention initiatives. Prevention of this condition is possible through early intervention 60. According to research conducted in Jordan, students (65.5 percent) want a more thorough PMS program that includes testing for genetic and viral disorders. Our survey findings, which were consistent with those of a study conducted among Bangladeshi students, indicated that most participants were in favor of making PMS a required test 20. Moreover, the Minister of Health declared that "Bangladesh would be free of thalassemia by 2028." To date, government initiatives to combat thalassemia have focused on increasing public awareness, enhancing clinical patient management, and providing limited financial support. Governmental measures are often insufficient because of financial and logistical limitations. The High Court of Bangladesh has received a written petition to make premarital screening mandatory as a matter of public interest, which has garnered media attention.
Premarital screening as an intervention needs to have a long-term emphasis on raising awareness of this issue. Prior research in other nations has demonstrated that thalassemia education and screening programs aimed at high school students (aged 16 and above) can be beneficial in preventing the birth of affected children 61,62. Nearly half the participants with good knowledge reflected this idea in our study. This could be part of a strategy to mold the mindset of specific pubertal age groups, as this is the period of knowledge dissemination and development of the right perception. The study showed that most participants (59%) preferred to recommend that a thalassemia carrier marry a non-carrier and vice versa, while 30% approved marriage without having a child. This result is supported by several studies conducted to assess the importance of pre-marital screening 45,63,64. However, carriers of thalassemia should consider the idea of a "safe marriage," in which at least one partner is not a carrier. In Sri Lanka, this is recommended as a preventative measure for thalassemia 63. The rest of the participants suggested that they did not marry. Previous studies reported the same observations 20,64. The positive opinions of the participants expressed the significance of the dissemination of knowledge about screening programs, which would improve conception-related complications in a carrier. It should be considered to raise mass awareness at the community level by setting a national policy 65.
Blood, marriage, kinship, identity, and parenthood are highly valued in South Asian cultures, particularly in Bengali society; hence, having a genetic mutation or thalassemia carrier status may be seen as a sign of polluting blood and prone to stigma 66. In contrast, we found that more than half of the respondents supported decision-making when both partners were carriers. The results of a study conducted in Saudi Arabia were consistent with this finding, stating that cultural pressure is an etiology 67.
In areas with a high prevalence of hemoglobinopathies, registrars should perform routine premarital screening to identify and prevent marriages that pose risk 68. The registrar should conduct a prenatal diagnosis if an at-risk couple is found to carry a fetus with beta thalassemia. Molecular studies, which are required for precise identification of at-risk couples and eventual prenatal diagnosis, can be used to accomplish this 69. Most participants (75%) provided the same opinions as those of our study.
For informed decision making and disease prevention, at-risk couples with thalassemia must receive directive counselling. Additionally, it is important to stop the birth of children who will be affected by the condition and lessen the social and economic difficulties that come with it 70,71. Similar attitudes regarding directive counselling were observed in the present study. However, less than one-fourth (18%) of participants stated that it was unjustifiable, which echoed another study stating that in counselling, the idea of autonomy should not be overlooked, and a non-directive method should be used 72.
In this study, nearly half the participants did not terminate the fetus. Furthermore, less than 25% of respondents found it to be just for the mother and family. The reluctance in such a manner is likely to load the disease burden on all aspects of the family, society, and country. According to reports, premarital screening programs and carrier screening at an early age (in school) may be more effective and socially acceptable in our communities than prenatal diagnosis performed in the antenatal clinic 45.
The diversity of opinions regarding marital preferences, carrier inquiries, and medical procedures highlights the complex ethical and cultural dimensions of thalassemia prevention. It is crucial to respect individual choices while providing information and guidance to make informed decisions. This suggests a need for comprehensive counselling services that can address the multifaceted aspects of thalassa-related decisions, including family planning and prenatal care.
Logistic regression analysis provided valuable insights into the factors that influence thalassemia knowledge among university students. Age, gender, urban/rural residence, type of institute, academic year, and economic status all played significant roles. These findings could guide the development of targeted interventions. For example, awareness campaigns can be tailored to younger age groups, males, rural areas, and specific academic years or disciplines. Additionally, economic status should be considered when planning outreach efforts as it may impact access to educational resources and healthcare services. Nevertheless, this finding is consistent with previous studies 58,73. Marital status was not significantly associated with the knowledge level of screening. However, studies in Nigeria revealed that the marital status of participants is significantly associated with the overall knowledge distribution about thalassemia screening 74–76. Nevertheless, as it is a cross-sectional study, respondents from a certain age group with Internet facilities represent the mass portion. Further research is required to determine the depth of pre-marital screening conception. In addition, the data were collected using an online platform, which interrupted the generalization of the data.