Background: Improvement in medical management has enabled transfusion dependent thalassaemia (TDT) patients to survive beyond childhood, building families, and contributing to the labour force and society. Knowledge about their adult life would provide guidance on how to support their needs. This study aims to explore the general well-being of adults with TDT, their employment status and challenges.
Methods: This study recruited 450 people with TDT, aged 18 and above, of both genders through all regional Thalassaemia societies in Malaysia and from the two participating hospitals, over five months in year 2016. A self-administered questionnaire including 'Healthy Days Core Module', WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders.
Results: A total of 196 adults with TDT responded to the survey (43.6% response rate). Almost half (45%) had comorbidities and 9% suffered multiple complications: bone-related (13%), hormonal (12%), cardiac (3%) and infections (2%), resulting in 23% seeking treatment more than twice monthly. Within a month, they suffered from at least three days with poor physical and or mental health and their normal daily activities were disrupted up to three days. 36% were jobless and 38% of those with a job were receiving salaries below RM1000. The mean WHOQOL-BREF score (mean (SD)) was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Having days with mental issues, financial status, education level, ethnic and marital status were main factors affecting QOL scores. Open questions showed dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy.
Conclusion: The adults with TDT perceived their health as good and had less unhealthy days when compared with people with other chronic diseases. However, some perceived themselves to be facing more life disruption in a rather non-supportive community and that health services do not meet their needs. Future qualitative studies are needed to focus on their perceived needs and to look for more tailored supportive approaches.
Keywords: Employment; Healthy days; Quality of life; Thalassaemia.
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.
© 2021. The Author(s).