scholarly journals Barriers to Premarital Thalassemia Screening in Asia

2021 ◽  
Vol 19 (8) ◽  
Author(s):  
Nazish Jaffar ◽  
Laaraib Khan ◽  
Urooba Imran Ahmed ◽  
Nimra Hussain Vistro ◽  
Amna Khan ◽  
...  

Thalassemia is a genetic disorder of hemoglobin synthesis. Every year 70,000 infants are born with beta thalassemia globally. Its incidence can be reduced by premarital thalassemia screening This review aims to focus on barriers to premarital thalassemia screening and to observe the current thalassemia practices in Asian countries. This study was conducted on six countries of Asia based on economic status according to World Bank criteria. High income states included Kingdom of Saudi Arabia, and Oman, Iran constituted an upper middle-income country and in lower middle-income category Sri Lanka, Pakistan and Bangladesh were considered. Search engines like PubMed, Research Gate and Google scholar were used to look for relevant articles from 2005 to 2019. A total of (89) articles were reviewed and (61) articles were finally selected to be included in this review. In Saudi Arabia, major obstacles for premarital thalassemia screening included planned weddings (43%), fear of social disgrace (21%), pressure from family (17%), and religious factors (14%). While in Oman, 4% of the people feared positive results and also considered it as an insult. Amongst the Iranian population, financial burden on couples, disease phobia, fear of positive results, difficulty in accessibility, tribal variances and sociodemographic factors were frequent hindrances to a screening program. Religious factors, financial constraint and lack of awareness cause reluctance in Pakistan and Bangladesh. Moreover, in Sri Lanka, factors like cancellation of marriage and sociocultural norms were identified as negative outcomes of the screening. In conclusion, a negative attitude and reluctant response to premarital thalassemia screening was observed in people belonging to all the countries included. Major contributing factors were religious misconceptions, social stigma, varying ethnicities, low financial status and poor accessibility to screening programs. Key words: Beta thalassemia, thalassemia screening, premarital screening, consanguineous marriage, social impact


2015 ◽  
Vol 48 (2) ◽  
pp. 122-126 ◽  
Author(s):  
Priyanka Bhagat ◽  
Ravinder Kaur Sachdeva ◽  
Prashant Sharma ◽  
Man Updesh Singh Sachdeva ◽  
Sanjeev Chhabra ◽  
...  


2010 ◽  
Vol 2010 ◽  
pp. 1-5 ◽  
Author(s):  
Jin-Ai Mary Anne Tan ◽  
Ping-Chin Lee ◽  
Yong-Chui Wee ◽  
Kim-Lian Tan ◽  
Noor Fadzlin Mahali ◽  
...  

Thalassemia can lead to severe transfusion-dependent anemia, and it is the most common genetic disorder in Malaysia. This paper aims to determine the prevalence of thalassemia in the Kadazandusuns, the largest indigenous group in Sabah, East Malaysia.α- andβ-thalassemia were confirmed in 33.6% and 12.8%, of the individuals studied respectively. The high prevalence ofα- andβ-thalassemia in the Kadazandusuns indicates that thalassemia screening, genetic counseling, and prenatal diagnosis should be included as part of their healthcare system. This preliminary paper serves as a baseline for further investigations into the health and genetic defects of the major indigenous population in Sabah, East Malaysia.



2021 ◽  
Vol 4 (2) ◽  
Author(s):  
Rija Tariq ◽  
Talha Mahmud ◽  
Shabnam Bashir ◽  
Samia Akhtar ◽  
Muhammad Israr

Beta Thalassemia is the most common genetic disorder in Pakistan. This study was conducted to assess the knowledge, attitudes and practices of parents of children suffering from Thalassemia with regards to disease prevention. It also determined the degree of social and religious opposition faced by these parents during implementation of preventive practices Methods: A descriptive cross-sectional survey was conducted in the 36 districts of Punjab via nine regional centers of Punjab Thalassemia Prevention Project. 248 parents of Beta Thalassemia Major and Intermedia were interviewed using a pre-designed pre-tested structured questionnaire. All statistical analyses were conducted using Statistical Package for Social Sciences (IBM SPSS 23.0) Results: 83.5% of the respondents had adequate knowledge and 98.4% had positive attitudes. Knowledge and attitude were positively correlated (p=0.00). 93% opted for prenatal diagnosis and 91% opted for termination of affected fetus. Among these individuals 12% faced opposition from their family members when they went for diagnostic testing and this opposition rose to 20% when they had to opt for termination. The local religious clerics opposed prenatal diagnosis in 3% of the cases and termination in 7% of the cases Conclusion: When compared to previous studies the knowledge, attitudes and practices of our study population was better. Thus, population screening programs have a positive impact on knowledge, attitudes and practices of caregivers of Thalassemia patients. However, social and religious opposition needs to be countered for further implementation of effective preventive practices.



2017 ◽  
Vol 4 (5) ◽  
pp. 1630 ◽  
Author(s):  
Amit Saxena ◽  
Mumtaz Sharif ◽  
Sadaf Siddiqui ◽  
Swati Singh

Background: Thalassaemia is a chronic disorder requiring lifelong transfusions and medications causing emotional and financial burden to the family. This study was done to assess the knowledge and awareness of parents having a thalassemic child and to ameliorate their experiences in the upbringing of their child.Methods:A cross sectional, descriptive study was conducted in Pediatric Ward of a Tertiary care Hospital in Navi Mumbai from May-August 2016 in which parents of 40 beta Thalassemia major children between age group of 6 months to 15 years were enrolled. Parents were interviewed through a questionnaire to assess their knowledge, awareness, the practices they follow in regard to the transfusion, treatment, vaccination and prevention of thalassemia. The study also focuses on the emotional suffering of the parents.Results: 47.5% of parents were aware of thalassemia being a genetic disorder.62.5% were aware of regular blood transfusion. 23 parents were aware of the regular medications taken by their children. 42.5% parents had adequate knowledge of the optional vaccines to be taken. 90% parents followed a good practice of getting their child for regular blood transfusion and 92.5% gave them regular medicines.31 parents would periodically get their child investigated but 65% of parents lacked in giving optional vaccines to the child.60% agreed to undergo MTP while only 45% knew about the antenatal detection.Conclusions:Majority of parents followed good practice and had a positive attitude, though the knowledge and awareness about the disease was inadequate. 



2020 ◽  
Vol 26 (18) ◽  
pp. 2073-2086
Author(s):  
Saule Balmagambetova ◽  
Andrea Tinelli ◽  
Ospan A. Mynbaev ◽  
Arip Koyshybaev ◽  
Olzhas Urazayev ◽  
...  

High-risk human papillomavirus strains are widely known to be the causative agents responsible for cervical cancer development. Aggregated damage caused by papillomaviruses solely is estimated in at least 5% of all malignancies of the human body and 16% in cancers that affect the female genital area. Enhanced understanding of the complex issue on how the high extent of carcinogenicity is eventually formed due to the infection by the Papoviridae family would contribute to enhancing current prevention strategies not only towards cervical cancer, but also other HPV associated cancers. This review article is aimed at presenting the key points in two directions: the current cervical cancer prevention and related aspects of HPV behavior. Virtually all applied technologies related to HPV diagnostics and screening programs, such as HPV tests, colposcopy-based tests (VIA/VILI), conventional and liquid-based cytology, currently available are presented. Issues of availability, advantages, and drawbacks of the screening programs, as well as vaccination strategies, are also reviewed in the article based on the analyzed sources. The current point of view regarding HPV is discussed with emphasis on the most problematic aspect of the HPV family concerning the observed increasing number of highly carcinogenic types. Present trends in HPV infection diagnostics throughout the human fluids and tissues are also reported, including the latest novelties in this field, such as HPV assay/self-sample device combinations. Besides, a brief outline of the related prevention issues in Kazakhstan, the leading country of Central Asia, is presented. Kazakhstan, as one of the post-soviet middle-income countries, may serve as an example of the current situation in those terrains, concerning the implementation of globally accepted cervical cancer prevention strategies. Along with positive achievements, such as the development of a nationwide screening program, a range of drawbacks is also analyzed and discussed.



2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Keivan Moradi ◽  
Aboozar Mohammadi ◽  
Mohsen Kazeminia

Abstract Background The quantification of hemoglobin A2 (Hb A2; α2δ2) is used as a valuable test to differentiate α- and ß-thal carriers in clinical laboratories. Therefore, the HBD (δ-globin) gene variants could result in reduced levels of Hb A2 and have implications for thalassemia screening programs. The aim of the present study was to predict the consequences of HBD gene variants identified in the Iranome project. Results The highest number of variants was in the Persian Gulf Islanders. The variants of p.Gln132Glu (HBD: c.394C>G), p.Gly17Arg (HBD: c.49G>C), p.Thr5Ile (HBD: c.14C>T), and p.Ala28Ser (HBD: c.82G>T) presented damage results in three or more prediction tools. In addition, it seems that the p.Gly30= (HBD: c.90C>T) decreases the use of authentic splice and, instead, creates a new donor splice site (DSS) or leads to the use of a cryptic DSS. Conclusions Most of these variants have been associated with a decrease in Hb A2 levels. Due to the high mutational diversity in the HBB gene in the Iranian population and the use of Hb A2 quantification to differentiate α- and ß-thal carriers among Iranian clinical laboratories, some attention should be taken to a possible co-inheritance of HBD gene variants to avoid the misdiagnosis of ß-thal carriers.



BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e034986 ◽  
Author(s):  
Sara Valdebenito ◽  
Aja Murray ◽  
Claire Hughes ◽  
Adriana Băban ◽  
Asvini D Fernando ◽  
...  

IntroductionViolence against children is a health, human rights and social problem affecting approximately half of the world’s children. Its effects begin at prenatal stages with long-lasting impacts on later health and well-being. The Evidence for Better Lives Study (EBLS) aims to produce high-quality longitudinal data from cities in eight low- and middle-income countries—Ghana, Jamaica, Pakistan, the Philippines, Romania, South Africa, Sri Lanka and Vietnam—to support effective intervention to reduce violence against children. EBLS-Foundational Research (EBLS-FR) tests critical aspects of the planned EBLS, including participant recruitment and retention, data collection and analysis. Alongside epidemiological estimates of levels and predictors of exposure to violence and adversity during pregnancy, we plan to explore mechanisms that may link exposure to violence to mothers’ biological stress markers and subjective well-being.Methods and analysesEBLS-FR is a short longitudinal study with a sample of 1200 pregnant women. Data are collected during the last trimester of pregnancy and 2 to 6 months after birth. The questionnaire for participating women has been translated into nine languages. Measures obtained from mothers will include, among others, mental and physical health, attitudes to corporal punishment, adverse childhood experiences, prenatal intimate partner violence, substance use and social/community support. Hair and dry blood spot samples are collected from the pregnant women to measure stress markers. To explore research participation among fathers, EBLS-FR is recruiting 300 fathers in the Philippines and Sri Lanka.Ethics and disseminationThe study received ethical approvals at all recruiting sites and universities in the project. Results will be disseminated through journal publications, conferences and seminar presentations involving local communities, health services and other stakeholders. Findings from this work will help to adjust the subsequent stages of the EBLS project.



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