Quality of care and outcomes of transfusion-dependent thalassaemia in Sabah, Malaysia: a registry-based comparison of specialist and non-specialist hospitals

Thalassaemia is a common inherited autosomal recessive haemoglobinopathy in Malaysia, with a high disease burden in the state of Sabah. Despite universal health coverage, geographical and health system challenges may influence quality of care and outcomes across hospital settings. This study aimed to characterise the epidemiology of transfusion-dependent thalassemia (TDT) in Sabah and compare the quality-of-care indicators and clinical outcomes between specialist and non-specialist hospitals. This cross-sectional study using data from the Malaysian Thalassaemia Registry (MTR) in year 2023 included all TDT patients under active follow-up in 22 public hospitals in Sabah. Patients were categorised by hospital type (specialist vs. non-specialist). Key quality indicators and outcomes assessed included serum ferritin, pre-transfusion haemoglobin (Hb), chelation regimens, thalassaemia-related complications, T2*-weighted magnetic resonance imaging (MRI) monitoring for cardiac and liver iron, and mortality. Descriptive analyses were performed. Of 1,865 thalassaemia patients, 1,425 (76.4%) were TDT. Median age was 15 years (IQR: 9–22), most were aged < 20 years and of Kadazan-Dusun ethnicity. β-thalassemia major accounted for 89.7% of diagnoses. Overall, median serum ferritin was 3,423 µg/L (IQR: 1,929-6,242) and lower in specialist hospitals compared to non-specialist hospitals (median: 3,235 µg/L vs. 3,625 µg/L). More than one-third (35.7%) of patients achieved serum ferritin of < 2,500 µg/L with a significantly greater proportion in specialist hospitals. Pre-transfusion Hb levels were suboptimal (median: 8.1 g/dl, IQR: 7.2–8.8) with specialist hospitals achieving higher median Hb and a greater proportion of patients meeting the ≥ 9 g/dL target. Biennial T2* MRI adherence was better in specialist hospitals, although complications were more frequently reported. In 2023, 42 deaths (2.9%) occurred, predominantly among patients < 30 years. Deaths in non-specialist hospitals occurred at younger ages. Although infection remained the leading cause (61.9%), cardiac-related deaths were more frequently reported in non-specialist hospitals (31.6% vs. 8.7%). Thalassaemia care and outcomes in Sabah remained below national standards. Patients managed in specialist hospitals were achieving better ferritin control, pre-transfusion Hb, and adherence to recommended monitoring. These disparities underscore the urgent need to strengthen healthcare delivery across the state, particularly in non-specialist settings where gaps in care are most pronounced.