Knowledge and Beliefs Regarding Thalassemia in an Urban Population

Abstract

Background: Thalassemia is one of the most common genetic blood disorders in Asia. Consanguineous marriages and avoiding pre-marital and antenatal screening are common in Pakistan due to psychosocial, cultural, and religious factors. Few studies have investigated the beliefs regarding thalassemia, especially in a developing country. The aim of this study was to assess the knowledge, beliefs, and practices regarding thalassemia in an urban population.Method: A cross-sectional descriptive study was conducted in the urban areas of Karachi, Pakistan over a period of six months during March 2016 through August 2016. Participants selected by representative sampling were interviewed face-to-face using a pre-designed, pre-tested questionnaire. The questionnaire was divided into four parts. The first part inquired about general demographic variables, while the second part assessed knowledge of the participant regarding thalassemia. The third and fourth parts were concerning the beliefs and practices regarding thalassemia. Data were entered and analyzed using the Statistical Package for Social Sciences (SPSS) Statistics, v. 24.0 (IBM SPSS Statistics, Armonk, NY).Results: Only 53% (n = 720) of the respondents had heard about thalassemia. The mean knowledge score was 5.8. The total possible score ranged between 0 - 12 with the higher scores indicating better knowledge. About three-quarters (70%) of the sample did not know that an individual can be a carrier of thalassemia. Less than half (38%) of the participants viewed premarital screening for thalassemia as necessary, with only 10% agreeing that thalassemia carriers should not marry. There was no pre-marriage counseling done in 98% of the families. Conclusion: Our study highlights the prevalence of numerous myths and a low level of knowledge regarding thalassemia in an urban population of Pakistan.

Public Perceptions and Attitudes of Bangladeshi Population towards Thalassemia Prevention: A Nationwide Study

“…The participants' knowledge of thalassemia as an inherited disorder was relatively better in this study. In contrast, a study conducted in Pakistan documented that only 40% were aware of the nature of disease (24). However, an alarming nding of our study was that half of the respondents were unaware about the role of consanguineous marriages in the incidence of thalassemia which was incongruous with a previous study in Pakistan (21).…”

“…Merely 7.7% of the study population got themselves screened for thalassemia. This nding was similar with the Indian study where 2% of the participants performed premarital testing (24). Ignorance, fear of being stigmatized for positive results, and endangering future prospects of getting married are considered barriers to not perform any screening test.…”

Knowledge Level about Thalassemia among High School Students in Pontianak City, West Kalimantan, Indonesia

“…Research by Ebrahim et al revealed that 53% of respondents had heard information about thalassemia before. 21 Balcin revealed that more than half of the respondents (57.7%) had heard of thalassemia before, while research in India had a much higher number, as many as 85% of respondents had heard the term disease. 22 The low awareness of the term thalassemia in this study shows that thalassemia is a disease that has not been widely discussed in society, but its prevalence is quite high.…”

Thalassemia Patients from Baluchistan in Pakistan Are Infected with Multiple Hepatitis B or C Virus Strains

“…In a study from Karachi, persons were interviewed regarding their knowledge on thalassemia. 43 Most did not know that it is a genetic disorder which causes a lifelong burden for the affected individuals 43 and low quality of life. 44 , 45 With modern treatments, as iron chelation therapy, and advances in the knowledge of the disorder, the mortality related to thalassemia has been reduced significantly worldwide.…”