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      Identification of optimal thalassemia screening strategies for migrant populations in Thailand using a qualitative approach

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          Abstract

          Background

          Thalassemia is a common inherited hemoglobin disorder in Southeast Asia. Severe thalassemia can lead to significant morbidity for patients and economic strain for under-resourced health systems. Thailand’s thalassemia prevention and control program has successfully utilized prenatal screening and diagnosis to reduce the incidence of severe thalassemia in Thai populations, but migrant populations are excluded despite having high thalassemia prevalence. We sought to identify key barriers to and facilitators of thalassemia screening and to develop tailored recommendations for providing migrants with access to thalassemia prevention and control.

          Methods

          We conducted 28 in-depth interviews and 4 focus group discussions (FGDs) in Chonburi, Thailand with Myanmar and Cambodian migrants, Thai healthcare providers, Thai parents of children affected by thalassemia, and migrant agents.

          Results

          Participant narratives revealed that migrants’ lack of knowledge about the prevalence, manifestations, severity, and inherited nature of thalassemia led to misconceptions, fear, or indifference toward thalassemia and screening. Negative perceptions of pregnancy termination were based in religious beliefs but compounded by other sociocultural factors, presenting a key obstacle to migrant uptake of prenatal screening. Additionally, structural barriers included legal status, competing work demands, lack of health insurance, and language barriers. Participants recommended delivering public thalassemia education in migrants’ native languages, implementing carrier screening, and offering thalassemia screening in convenient settings.

          Conclusions

          An effective thalassemia prevention and control program should offer migrants targeted thalassemia education and outreach, universal coverage for thalassemia screening and prenatal care, and options for carrier screening, providing a comprehensive strategy for reducing the incidence of severe thalassemia in Thailand and establishing an inclusive model for regional thalassemia prevention and control.

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          Most cited references38

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          A systematic analysis of global anemia burden from 1990 to 2010.

          Previous studies of anemia epidemiology have been geographically limited with little detail about severity or etiology. Using publicly available data, we estimated mild, moderate, and severe anemia from 1990 to 2010 for 187 countries, both sexes, and 20 age groups. We then performed cause-specific attribution to 17 conditions using data from the Global Burden of Diseases, Injuries and Risk Factors (GBD) 2010 Study. Global anemia prevalence in 2010 was 32.9%, causing 68.36 (95% uncertainty interval [UI], 40.98 to 107.54) million years lived with disability (8.8% of total for all conditions [95% UI, 6.3% to 11.7%]). Prevalence dropped for both sexes from 1990 to 2010, although more for males. Prevalence in females was higher in most regions and age groups. South Asia and Central, West, and East sub-Saharan Africa had the highest burden, while East, Southeast, and South Asia saw the greatest reductions. Iron-deficiency anemia was the top cause globally, although 10 different conditions were among the top 3 in regional rankings. Malaria, schistosomiasis, and chronic kidney disease-related anemia were the only conditions to increase in prevalence. Hemoglobinopathies made significant contributions in most populations. Burden was highest in children under age 5, the only age groups with negative trends from 1990 to 2010.
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            Global epidemiology of haemoglobin disorders and derived service indicators.

            To demonstrate a method for using genetic epidemiological data to assess the needs for equitable and cost-effective services for the treatment and prevention of haemoglobin disorders. We obtained data on demographics and prevalence of gene variants responsible for haemoglobin disorders from online databases, reference resources, and published articles. A global epidemiological database for haemoglobin disorders by country was established, including five practical service indicators to express the needs for care (indicator 1) and prevention (indicators 2-5). Haemoglobin disorders present a significant health problem in 71% of 229 countries, and these 71% of countries include 89% of all births worldwide. Over 330,000 affected infants are born annually (83% sickle cell disorders, 17% thalassaemias). Haemoglobin disorders account for about 3.4% of deaths in children less than 5 years of age. Globally, around 7% of pregnant women carry b or a zero thalassaemia, or haemoglobin S, C, D Punjab or E, and over 1% of couples are at risk. Carriers and at-risk couples should be informed of their risk and the options for reducing it. Screening for haemoglobin disorders should form part of basic health services in most countries.
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              The prevention of thalassemia.

              The thalassemias are among the most common inherited diseases worldwide, affecting individuals originating from the Mediterranean area, Middle East, Transcaucasia, Central Asia, Indian subcontinent, and Southeast Asia. As the diseases require long-term care, prevention of the homozygous state constitutes a major armament in the management. This article discusses the major prevention programs that are set up in many countries in Europe, Asia, and Australia, often drawing from the experience in Sardinia. These comprehensive programs involve carrier detections, molecular diagnostics, genetic counseling, and prenatal diagnosis. Variability of clinical severity can be attributable to interactions with α-thalassemia and mutations that increase fetal productions. Special methods that are currently quite expensive and not widely applicable are preimplantation and preconception diagnosis. The recent successful studies of fetal DNA in maternal plasma may allow future prenatal diagnosis that is noninvasive for the fetus.
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                Author and article information

                Contributors
                Julia.xu2@nih.gov
                meghan.foe@ucsf.edu
                wilaslakthal@gmail.com
                thidaratsuksangpleng@gmail.com
                guidezy@yahoo.com
                tummy_mb12@hotmail.com
                marilyn.telen@duke.edu
                bnkaiser@ucsd.edu
                vip.vip@mahidol.edu
                Journal
                BMC Public Health
                BMC Public Health
                BMC Public Health
                BioMed Central (London )
                1471-2458
                6 October 2021
                6 October 2021
                2021
                : 21
                : 1796
                Affiliations
                [1 ]GRID grid.26009.3d, ISNI 0000 0004 1936 7961, Department of Medicine, , Duke University, ; Durham, USA
                [2 ]GRID grid.94365.3d, ISNI 0000 0001 2297 5165, National Heart, Lung, and Blood Institute, , National Institutes of Health, ; 10 Center Drive Room 6N240C, Bethesda, MD 20892 USA
                [3 ]GRID grid.266102.1, ISNI 0000 0001 2297 6811, Department of Hematology/Oncology, , University of California San Francisco Benioff Children’s Hospital Oakland, ; Oakland, USA
                [4 ]Department of Pediatrics, Laem Chabang Hospital, Laem Chabang, Thailand
                [5 ]GRID grid.10223.32, ISNI 0000 0004 1937 0490, Siriraj-Thalassemia Center, , Mahidol University, ; Bangkok, Thailand
                [6 ]GRID grid.26009.3d, ISNI 0000 0004 1936 7961, Duke Global Health Institute, , Duke University, ; Durham, USA
                [7 ]GRID grid.266100.3, ISNI 0000 0001 2107 4242, Department of Anthropology and Global Health Program, , University of California San Diego, ; La Jolla, USA
                [8 ]GRID grid.416009.a, Department of Pediatrics, , Faculty of Medicine Siriraj Hospital, Mahidol University, ; 2 Wanglang Road, Bangkoknoi, Bangkok, 10700 Thailand
                Article
                11831
                10.1186/s12889-021-11831-4
                8495975
                34615515
                21012fde-1156-4d1a-ba05-f9c33df90e81
                © The Author(s) 2021

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 18 February 2021
                : 17 September 2021
                Categories
                Research
                Custom metadata
                © The Author(s) 2021

                Public health
                thalassemia,migrants,barriers to care,healthcare access,migration policy,prenatal screening,genetic testing,termination of pregnancy,thailand,southeast asia

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