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

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.

Stigma associated with genetic testing for rare diseases—causes and recommendations

“…The authors believe that public education can be used to amend social norms, including reducing stigma. Public education needs to be disseminated in local languages, in addition to offering carrier screening in convenient ( Xu et al, 2021 ) and culturally appropriate settings and with measures that proactively address the potential stigma. Often patients and their families are unable to find the necessary support to completely understand the diagnosis, implication of the results, and the management options available.…”

Global burden and unmet needs in the treatment of transfusion-dependent β-thalassemia

“…Difficulties in communication and understanding of medical terminology led to these refugees being overlooked by screening programs (48). Owing to the large volume of migrant workers coming to Thailand, it has been recommended that the Thai government extend prevention and control programs to include migrant workers living in the country, many of whom come from other countries where b-thalassemia is endemic (49).…”

Estrategias de implementación de la medicina personalizada de precisión en otros sistemas sanitarios públicos internacionales. Estado del arte.

“…No se han localizado planes de evaluación de tecnologías sanitarias ni de evaluación de la implementación específicos para la MPP en este país. La financiación para esta implementación tiene en Tailandia un origen principalmente público 30,96,97 .…”