Quality of life and challenges experienced by the surviving adults with transfusion dependent thalassaemia in Malaysia: a cross sectional study

Abstract

Plain English Summary What is the problem? With advancements in medical care, more people with transfusion dependent thalassaemia (TDT) reached adulthood, something which was uncommon decades ago. They should have similar physical-mental capabilities as people without TDT. However, the stigma of their condition has remained and their potential capabilities have often been underestimated by the public. We need to understand their adult life in order to assist them further. What did we do? We surveyed 196 TDT patients, using a set of questionnaires. We enquired of their perceptions about their health status and quality of life (QOL: physical, mental, social relationship, environment). We asked them open questions on challenges they were facing during adulthood and employment. What did we find? Some participants (45%) were found to have other medical problems and that they could be feeling unwell at least three days in a month. Participants scored above 60 out of 100 for all of the QOL aspects (a higher score denotes a better QOL). We noted some continued to lose career advancement opportunities, face discrimination and had difficulties managing their health, in a rather non-supportive community. What is our conclusion? People with TDTs were doing relatively well as young adults. Life challenges persist. More qualitative studies are needed to understand their challenges better and to look for more tailored supportive approaches.

Keywords

• Thalassaemia
• Quality of life
• Healthy days
• Employment