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.
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.
Authors: Linda J Burns; Beatrice Abbetti; Stacie D Arnold; Jeffrey Bender; Susan Doughtie; Areej El-Jawahiri; Gloria Gee; Theresa Hahn; Mary M Horowitz; Shirley Johnson; Mark Juckett; Lakshmanan Krishnamurit; Susan Kullberg; C Fred LeMaistre; Alison Loren; Navneet S Majhail; Elizabeth A Murphy; Doug Rizzo; Alva Roche-Green; Wael Saber; Barry A Schatz; Kim Schmit-Pokorny; Bronwen E Shaw; Karen L Syrjala; D Kathryn Tierney; Christina Ullrich; David J Vanness; William A Wood; Ellen M Denzen Journal: Biol Blood Marrow Transplant Date: 2018-02-03 Impact factor: 5.742
Authors: Farrukh Shah; Paul Telfer; Mark Velangi; Shivan Pancham; Robert Wynn; Sally Pollard; Elizabeth Chalmers; Jonathan Kell; Angela M Carter; Joe Hickey; Clark Paramore; Minesh Jobanputra; Kate Ryan Journal: EJHaem Date: 2021-09-08
Authors: Giovanni Caocci; Fabio Efficace; Francesca Ciotti; Maria Grazia Roncarolo; Adriana Vacca; Eugenia Piras; Roberto Littera; Raji Suleiman Dawood Markous; Gary Stephen Collins; Fabio Ciceri; Franco Mandelli; Sarah Marktel; Giorgio La Nasa Journal: BMC Blood Disord Date: 2012-06-22