Health-related quality of life and financial impact of caring for a child with Thalassaemia Major in the UK.
Child Care Health Dev
; 36(1): 118-22, 2010 Jan.
Article
em En
| MEDLINE
| ID: mdl-19961496
ABSTRACT
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.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Qualidade de Vida
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Nível de Saúde
/
Efeitos Psicossociais da Doença
/
Talassemia beta
Tipo de estudo:
Health_economic_evaluation
/
Qualitative_research
Limite:
Adolescent
/
Adult
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Child
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Female
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Humans
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Male
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Middle aged
País como assunto:
Europa
Idioma:
En
Ano de publicação:
2010
Tipo de documento:
Article