OBJECTIVES : To explore the journey of transfusion-dependent thalassaemia patients in seeking treatment in Malaysian public hospitals.

METHODS : A qualitative study using semi-structured interviews were conducted between July- September 2018 in five states in Malaysia to map the journey of thalassaemia patients in seeking treatment. Adult thalassaemia patients and caretakers of pediatric thalassaemia patients were recruited in seven public hospitals. Interviews were recorded with patients’ written consent. Audio recordings were transcribed by different investigators and transcriptions were compared to ensure validity. Contents were then analysed to map patients’ experiences to seek treatment.

RESULTS : A total of 23 participants were interviewed. All participants reported satisfactory access to initial diagnosis and treatment in public healthcare. 82.9% participants reported to having multiple visits to hospitals in a month for blood tests and transfusions causing loss of productivity and financial strain. Participants from rural areas reported difficulty having to take several modes of public transportation to reach the hospitals. Overcrowding in public hospitals put further strain in patients’ adversity.

CONCLUSIONS : This study reveals vital insight of patient’s challenges in getting treatment in public hospitals. The findings suggest some correctional measures must be taken by service provider to ensure optimal healthcare delivery to thalassaemia patients in Malaysia.