Quality of Life and Challenges Experienced by the Surviving Adults With Transfusion Dependent Thalassaemia in Malaysia: A Cross Sectional Study

Abstract

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 We contacted all regional Thalassaemia societies in Malaysia to invite TDT members aged 18 or over to participate. Participants were also recruited from the two participating hospitals. A self-administered questionnaire including ‘CDC Healthy-days’, WHOQOL-BREF and employment measurements was used. Multiple linear regression models were fitted with associations adjusted for several potential confounders. Results Of the 196 participants, almost half (45%) had comorbidities and 20% suffered multiple types: 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 a mean 3.1 (SD 3.0) days of feeling unhealthy physically, a mean 2.6 (SD 3.5) days mentally unhealthy and their normal daily activities performance were affected for approximately 2.5 (SD 3.3) days - leading to 36% being jobless and 38% of those with a job receiving salaries below RM1000. The mean quality of life (QOL) score (mean (SD) for each QOL domain was: physical health 62.6 (15.5), psychological health 64.7 (15.7), social relationship 64 (15.9), environmental health 60.8 (16.7). Frequent activities limited days, being single, unwillingness to disclose thalassaemia status, presence of comorbidities, discrimination experiences and perceptions about employment difficulties were associated with lower QOL scores. Dissatisfaction with health service provision, conflicting judgement in prioritising between health and job, and poor public empathy were expressed. Conclusion Adults with TDT appeared to be fairly positive about their life in spite of high number of dysfunctional days and had perceptions that health services do not meet their needs. They continued to face life disruption in a rather non-supportive community. Supportive approaches and life-skill training are necessary where interventions should be started during childhood. Adjustment to health services should be considered.

Social Impact and Quality of Life of Patients with β-Thalassaemia: A Systematic Review

“…The difficulties experienced range from being discriminated against, having unsupportive colleagues and friends, being inhibited from developing to their full potentials, and getting a lower salary, to being fearful of losing their employment due to their frequent time away from work. 16 These significant factors add to the economic burden associated with a chronic disease, with implications for both the individual affected and the healthcare system overall.…”

“…In middle-to low-income countries, in addition to economic aspects, religious factors and social stigma also play a role in lowering the level of QoL. 16…”