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.
Background Thalassemia, an inherited hemoglobin disorder, has become a global public health problem due to population migration. Evidence-based strategies for thalassemia prevention in migrants are lacking. We characterized barriers to thalassemia screening and the burden of thalassemia in migrant workers in Thailand. Methods Multilingual demographic and KAP surveys were completed by 197 Thai, 119 Myanmar, and 176 Cambodian adults residing in Thailand. Thalassemia awareness, socio-demographic predictors, and knowledge and attitude scores were compared between migrant and Thai subjects. Comprehensive thalassemia testing was performed for migrants. Results Migrants had extremely poor thalassemia awareness (4.1%) compared to Thai subjects (79.6%) and had lower thalassemia knowledge scores but similar attitude scores. Surveys identified differing sociodemographic factors predicting awareness in Thai and migrant subjects, as well as key misconceptions likely to hinder thalassemia screening uptake. Nearly all migrants consented to thalassemia testing. We identified abnormal hemoglobin profiles in 52.7% of migrants and a higher projected rate of severe thalassemia births in migrants. Conclusions The high burden of thalassemia and tremendous knowledge gap in migrants needs urgent attention. Thalassemia screening was feasible and acceptable in our migrant population. Sociocultural and structural barriers merit further attention when designing thalassemia screening and prevention policies for migrants in Thailand and globally.
BACKGROUND: Severe thalassemia is common in Southeast Asia (SEA) and can lead to transfusion dependent anemia, growth retardation, and perinatal death. Prevention and control of thalassemia can be approached either preconceptionally (through carrier screening, reproductive planning, or preimplantation diagnosis) or antenatally (through prenatal screening and diagnosis and termination of pregnancy). Thailand's national thalassemia program focuses on antenatal interventions, provided free to citizens. However, there is a growing population of migrant workers from neighboring countries who face barriers to healthcare and likely have varied beliefs towards pregnancy termination. We conducted a mixed-methods study using survey, interview, and focus group data to identify key barriers to and optimal strategies for thalassemia screening in migrant communities in Thailand. METHODS: Myanmar and Cambodian migrant workers and agents, Thai healthcare providers, and Thai adults (aged 18-49 years) at Laem Chabang Hospital (Chonburi, Thailand) participated in a knowledge, attitudes, and practices (KAP) survey, interviews, and focus groups. All sessions were conducted in Thai or English, audio recorded, transcribed and translated into English, and analyzed thematically using MAXQDA. Codes were developed iteratively and used to answer key explanatory questions arising from the KAP survey. Ethical approval for the study was obtained from Mahidol and Duke Universities. RESULTS: Both quantitative and qualitative data showed dramatically lower thalassemia awareness in migrants vs Thai (Table 1). Furthermore, providers perceived migrants to be disinterested in thalassemia screening, though migrant narratives illustrated significant language barriers, economic barriers, lack of health literacy, and competing social stressors - all of which may contribute to perceived indifference towards thalassemia screening. Both Thai and migrants had misconceptions about thalassemia, believing it to be contagious and sexually transmitted, or equating thalassemia carrier status with disease and vice versa (Table 1). These misconceptions may contribute to the stigmatization and isolation of individuals with thalassemia and disincentivize carrier screening for fear of discrimination. Participants supported thalassemia prevention and identified antenatal care (ANC) as the main access point for thalassemia education, screening, and prevention. However, they described key limitations of this antenatal approach, including the inability to offer termination in pregnancies presenting late to ANC; couples' hesitation to terminate; cost of prenatal testing (for migrants); and reliance on male partners to present for prenatal testing. In addition, migrants expressed more negative attitudes towards termination of pregnancy on the survey (Table 1). Participants associated this attitude with the perception that migrants were more religious, less educated, less knowledgeable about genetic disease risk, and more eager to have children. Participants proposed a number of solutions, including targeted education, delivered in migrants' native languages through ANC or public media, and universal carrier screening as a more acceptable approach to thalassemia prevention and control in migrant communities. Recommended settings for screening include schools or universities, hospitals, and workplaces. Migrants also reported relying heavily on employers for access to healthcare. Therefore, employer engagement in thalassemia education and screening efforts is critical, though employment discrimination remains a concern. CONCLUSION: This study provides insight from a variety of stakeholders into potential barriers and strategies for thalassemia screening in SEA migrant populations. Findings highlight a profound lack of thalassemia awareness among migrants leading to apparent disinterest in thalassemia screening, misconceptions and stigma surrounding thalassemia, and negative attitudes towards termination of pregnancy. Promotion of public education and carrier screening is an optimal strategy for migrant populations in Thailand. Furthermore, this approach can be adopted regionally and cooperatively by member states of the Association of SEA Nations (ASEAN) to better address the shared public health problem of thalassemia. Disclosures Telen: Pfizer: Other: Member of a clinical trial steering committee; Novartis: Other: Member of a safety monitoring committee; Forma Therapeutics: Research Funding.
Background:Globally, many screening programs for severe thalassemia (thal) syndromes use red blood cell (RBC) indices; mean corpuscular volume (MCV) <80 fl and/or mean corpuscular hemoglobin (MCH) <25 pg as cut‐off to identify thal disease and carriers. These criterion seem to be sensitive for individual with α°‐thal by two α‐globin gene deletions (‐‐/αα) and β‐thal traits. However this approach cannot be used for confidential identification α+‐thal trait (‐α/αα) due to a wide variation of baseline MCV and MCH. Recently, a single nucleotide polymorphism (SNP) of an iron regulation gene; tmprss6 involved in substitution a nucleotide between thymine (T) and cytosine (C) in exon 17 resulted to amino acid change from valine to alanine (V736A) has been described to associate with RBC indices. However its role on thalassemic RBC remains largely unknown.Aims:To determine the effects of common SNP rs855791 of tmprss6 on RBC indices variation in deletional α‐thal carriersMethods:EDTA whole blood samples were collected from Thai healthy volunteers in cohort and measured complete blood count, RBC indices, hemoglobin typing and comprehensive molecular analysis panel covered > 98% of common globin mutations (α‐thal, β‐thal, Hb E) found in Thailand. SNP rs855791 genotypes of tmprss6 were analyzed by PCR‐RFLP with StuI restriction enzyme. Statistical analysis for average (mean), standard deviation (SD) and comparisons was performed by using PASW Statistics 18. The significant difference was determined by p ≤ 0.05.Results:Total 433 cases (age: 23.0 ± 8.7 years old, male: N = 141 (32.6%), female: N = 292 (67.4%)) of normal β‐globin gene (ββ) included three genotypes of α‐globin gene; normal (αα/αα) (N = 357, 82.4%), ‐α/αα (N = 61, 14.1%), and ‐‐/αα (N = 15, 3.5%) (Table 1). The allele frequency of SNP rs855791 of Thai population showed T:C as 0.6 to 0.4 that similar to other Asian population and consistent across different globin genotypes (Table2). The MCV and MCH ranges of two α‐globin genotypes; αα/αα and ‐α/αα showed an overlapping feature. Interestingly, we found no effect of either C or T polymorphism on RBC indices mainly MCV and MCH in individuals with normal globin genes. However the effects of SNP rs855791 genotypes on MCV and MCH were demonstrated in α‐thal traits. Increased MCV and MCH gradually expressed by SNP genotype C/C > C/T > T/T both in α+‐ and α°‐thal trait (Figure 1 and 2). Comparing the level of serum ferritin among different tmprss6 genotypes; the C/C seemed to have higher iron status followed by C/T and T/T, however there was no statistical significance (data not shown). Therefore this epistatic effect of tmprss6 on determining RBC indices in α‐thal carriers may operate through other mechanism.Summary/Conclusion:For the first time, we have identified that tmprss6 polymorphism can determine RBC size and hemoglobinization in carrier of α‐thal. The genetic mechanism of tmprss6 involved in the determination RBC indices in α‐thal mutations would be further studied.image
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