Thalassemia: a prevalent disease yet unknown term among college students in Saudi Arabia

Abstract

Thalassemia is a life-threatening blood disorder that has a high prevalence in Saudi Arabia despite the implementation of mandatory premarital testing and the availability of genetic counseling. This study aimed to assess college students' knowledge of thalassemia. A cross-sectional survey of a random sample of 920 senior students enrolled at King Abdulaziz University was conducted. A self-administered questionnaire was used to collect information about thalassemia and socio-demographic characteristics. Of the 920 students, 445 (48%) had ever heard of thalassemia. Despite the mandatory premarital testing for thalassemia, only 50% of married students stated having heard of the disease. The mean thalassemia knowledge score was 4.4 ± 2.2 out of a maximum of 12. Knowledge was significantly influenced by university faculty, gender, and education outside of Saudi Arabia. Those who had heard of thalassemia had misconceptions about the disease characteristics and pattern of inheritance such as associating thalassemia with low iron levels. A substantial proportion of the participants had a low knowledge of thalassemia. This lack of awareness requires a reassessment of the goals and success of the premarital testing program, including the genetic counseling services, and also indicates the importance of emphasizing thalassemia in school curricula and promoting and scaling up existing thalassemia campaigns in the region.

Lack of knowledge and misperceptions about thalassaemia among college students in Bangladesh: a cross-sectional baseline study

“…Nearly two-third (64.5%) of the respondents who had heard of thalassaemia were not aware of the fact that thalassaemia carriers are essentially as healthy as non-carriers. Similar lack of awareness towards thalassaemia carriers has been reported from Saudi Arabia (64%), India (~89%) and Malaysia (79.7%) [12,26,27]. This widespread lack of knowledge might be a pointer towards other sociocultural problems which make life more difficult not only for patients with thalassaemia but for thalassaemia carriers as well.…”

“…We found that the level of thalassaemia awareness was surprisingly low, and only one-third of the respondents (33%, n = 1578) had heard of thalassaemia. Being situated in the world's thalassaemia belt with an estimated carrier of about 6-12%, this result is quite unexpected [4] as compared to other thalassaemia-prevalent countries such as Malaysia (~87%), Italy (85%), Greece (95%), Bahrain (65%), Turkey (58%) and Saudi Arabia (48%) [12,[22][23][24][25][26]. This indicates that a major public health concern has been overlooked in Bangladesh.…”

“…Data on knowledge and attitude about thalassaemia were collected using a structured questionnaire. The design of the study questionnaire was based on a review of studies found in the literature [12,[25][26][27]40], and after consultation with experts including clinicians, public health researchers and a statistician. The questionnaire, which consisted of 22 questions divided into 2 parts, was prepared in the Bengali language, however, some of the medical terminologies could not be directly translated.…”

“…Screening when couples are already committed to their relationship and prior poor awareness about the consequence of having thalassemic children may have been some of the barriers for this outcome in Saudi Arabia [9,11]. Indeed, a recent study found that nearly half of college students sampled (including 50% of married students) had never heard of thalassaemia despite the implementation of premarital screening in Saudi Arabia [12]. Therefore, raising awareness is an essential component of a successful thalassaemia prevention initiative [13].…”

Disease Knowledge and Treatment Adherence among Adult Patients with Thalassemia: A Cross-sectional Correlational Study

“…In Saudi Arabia (SA), the estimated prevalence rate of β-TM major was 0.7 per 1000; 12.9 per 1000 for the trait and 13.6 per 1000 for β-TM [6]. The important risk factors affecting the occurrence of TM in SA are consanguineous marriage and lack of education programs and school screening [6,7]. Despite the SA's efforts to decrease the occurrence of TM through genetic counseling services and premarital screening programs, the marriage rates among high-risk groups have not significantly reduced [7].…”