Health‐related quality of life and financial impact of caring for a child with Thalassaemia Major in the UK

Background Thalassaemia Major (TM) is a serious condition characterized by life‐long dependence on blood transfusions and chelation therapy. Our aim was to determine health‐related quality of life (HRQOL) in children with TM living in the UK, and the impact of caring for a child receiving National Health Service treatment on family finances. Methods This was a cross‐sectional assessment of HRQOL in children (n= 22) with TM aged 8–18 years. Children were recruited from three UK Paediatric Haematology and Bone Marrow Transplant centres. Mothers completed measures of their child's HRQOL [PedsQL? 4.0 (Measurement Model for the Pediatric Quality of Life Inventory?, James W. Varni PhD, PedMetrics?, Quantifying the Qualitative SM, Copyright 1998–2009)] and behaviour (Strengths and Difficulties questionnaire), and the impact of caring for the child on family finances. Results Child behaviour was within the normal range but child HRQOL was significantly lower than population norms. Family financial concerns associated with TM were associated with poorer child HRQOL (P= 0.020). Conclusions Thalassaemia Major poses a considerable challenge to child HRQOL, well documented in areas of the world where TM is prevalent. Despite the availability of National Health Service care and financial benefits our study suggests a similar burden in the UK.