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Psychosocial burden of beta-thalassaemia major in Antalya, south Turkey
Duran Canatan1, Siret Ratip, Saniye Kaptan
1Department of Paediatric Haematology, Antalya State Hospital, P.O. Box 624, 07001 Antalya, Turkey.
Insights
Beta-thalassaemia, a severe inherited blood disorder, significantly impacts education and finances for affected families in Turkey. Most parents would opt for prenatal diagnosis if aware of the condition, highlighting the need for national screening programs.
Area of Science:
- Hematology
- Genetics
- Public Health
Background:
- Beta-thalassaemia is a major inherited blood disorder causing chronic anemia, necessitating lifelong transfusions and iron chelation.
- The condition poses a significant global health challenge, particularly in developing nations.
- Psychosocial burdens associated with beta-thalassaemia require thorough investigation.
Purpose of the Study:
- To evaluate the psychosocial burden experienced by children and adults with thalassaemia major and their parents in Antalya, Turkey.
- To identify the impact of thalassaemia on education, parental anxiety, employment, and marital stability.
- To inform national policy regarding public education, screening, and prenatal diagnosis for beta-thalassaemia.
Main Methods:
- A cross-sectional study involving 99 children and 32 adults with thalassaemia major, and 112 parents.
- Data collection through specifically designed questionnaires assessing psychosocial impact.
- Analysis of educational, financial, and psychological outcomes.
Main Results:
- Sixty percent of school-aged thalassaemic children experienced educational disruptions due to frequent hospital visits.
- High parental anxiety (82%) and significant employment/financial difficulties (47%) were reported.
- A low incidence of marital breakdown (1.8%) was observed.
- Ninety-three percent of parents expressed a preference for pregnancy termination if prenatal diagnosis of thalassaemia major was available.
Conclusions:
- Beta-thalassaemia imposes a substantial psychosocial and economic burden on affected families in Turkey.
- There is a strong parental desire for prenatal diagnostic services.
- The findings underscore the urgent need for a national policy promoting public education, widespread screening, and accessible prenatal diagnosis for beta-thalassaemia.
Abstract:
beta-thalassaemia is a recessively inherited blood disorder characterised by chronic anaemia. It requires monthly blood transfusions and regular iron chelation. Thousands of affected children are born annually and the magnitude of the problem is most severe in developing countries. Ninety-nine children and 32 adults with thalassaemia major, and 112 parents of patients were interviewed in Antalya, south Turkey, using specifically designed questionnaires to evaluate psychosocial burden. The education of most of the thalassaemic children of school age (60%) was affected, mainly due to having to attend hospital for investigation and transfusions. A high level of parental anxiety (82%) was reported. Nearly half of the families (47%) had employment and financial problems as a result of thalassaemia, yet there was a low level of marital breakdown (1.8%). A substantial majority (93%) of the parental couples would have chosen to terminate an affected pregnancy if they had known that the foetus had thalassaemia major. The results reflect the need for a national policy for public education and screening of thalassaemia in Turkey in order to offer prenatal diagnosis for all families at risk of homozygous thalassaemia.
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