Great Ormond St Hospital NHS Foundation Trust

London, United Kingdom

Great Ormond St Hospital NHS Foundation Trust

London, United Kingdom

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Hunter R.M.,University College London | Isaac M.,Great Ormond St Hospital NHS Foundation Trust | Frigiola A.,Great Ormond St Hospital NHS Foundation Trust | Brown K.,Great Ormond St Hospital NHS Foundation Trust | Bull K.,Great Ormond St Hospital NHS Foundation Trust
PLoS ONE | Year: 2013

Background: Tetralogy of Fallot is a congenital heart disease that requires surgical repair without which survival through childhood is extremely rare. The aim of this paper is to use data from the mandatory follow-up of patients with Tetralogy of Fallot to model the health-related costs and outcomes over the first 55-years of life. Method: A decision analytical model was developed to establish costs and outcomes for patients up to 55 years after diagnosis and first repair of Tetralogy of Fallot compared to natural progression. Data from Adult Congenital Heart Disease (ACHD) centres that follow up Tetralogy of Fallot patients and Great Ormond Street Hospital (GOSH), London, United Kingdom (UK) medical records was used to establish the cost and effectiveness of current interventions. Data from a Czech cohort was used for the natural, no intervention condition. Results: The average cost per patient of a repair for Tetralogy of Fallot was £26,938 (SE = £4,140). The full life time cost per patient, with no discount rate, was £65,310 (95% CI £64,981-£65,729); £56,559 discounted (95% CI £56,159-£56,960). Patients with a repair had an average of 35 Quality Adjusted Life Years (QALYs) per patient over 55 years undiscounted and 20.16 QALYs discounted. If the disorder was left to take its natural course, patients on average had a total of 3 QALYs per patient with no discount rate and 2.30 QALYs discounted. Conclusion: A model has been developed that provides an estimate of the value for money of an expensive repair of a congenital heart disease. The model could be used to test the cost-effectiveness of making amendments to the care pathway. © 2013 Hunter et al.


Eleftheriou D.,Great Ormond St Hospital NHS Foundation Trust | Brogan P.A.,Great Ormond St Hospital NHS Foundation Trust
Paediatrics and Child Health (United Kingdom) | Year: 2014

Systemic vasculitis is characterized by blood vessel inflammation which may lead to tissue injury from vascular stenosis, occlusion, aneurysm, and/or rupture. Apart from relatively common vasculitides such as Henoch-Schönlein Purpura (HSP) and Kawasaki disease (KD), most of the primary vasculitic syndromes are rare in childhood, but are associated with significant morbidity and mortality. Classification criteria for childhood vasculitis and a disease activity scoring tool have recently been proposed and validated. The cause of the majority of vasculitides is unknown, although it is likely that a complex interaction between environmental factors such as infections and inherited host responses trigger the disease and determine the vasculitis phenotype. Several genetic polymorphisms in vasculitis have now been described that may be relevant in terms of disease predisposition or development of disease complications. Treatment regimens continue to improve, with the use of different immunosuppressive medications and newer therapeutic approaches such as biologic agents. We provide an overview of paediatric vasculitides with emphasis on presenting features, current insights on aetiopathogenesis and treatment advances. © 2013 Elsevier Ltd.


Sargent J.,Great Ormond St Hospital NHS Foundation Trust | Clarke M.,University College London | Price K.,Great Ormond St Hospital NHS Foundation Trust | Griffiths T.,Great Ormond St Hospital NHS Foundation Trust | Swettenham J.,University College London
International Journal of Language and Communication Disorders | Year: 2013

Background Children with cerebral palsy often show significant communication impairment due to limited or absent speech. Further, motor impairment can restrict the use of movement, including pointing, to signal interest and intent. For some children, controlled gaze can be an effective 'point-substitute': such 'eye-pointing' can be used to request items, establish mutual interest in an event, or select vocabulary within an alternative or augmentative communication (ACC) system. However, in clinical practice there is a lack of clarity about how the term 'eye-pointing' is used, how 'eye-pointing' is recognized or how it relates to social development. Aims To present a clinical description of the term 'eye-pointing' with reference to children with severe cerebral palsy who cannot speak or finger-point. To consider this description within a wider discussion of the importance of gaze in communication development. Methods & Procedures Cumulative clinical observations during assessment of children referred to a specialist multidisciplinary communication clinic have provoked discussion between the authors on what factors precipitate use of the term 'eye-pointing' in young children with severe cerebral palsy. In particular, discussion has centred on whether use of the term is appropriate in individual cases and whether guidance is available about how gaze should be observed in this developmentally vulnerable group of children. A literature search was also conducted in order to explore whether the use and meaning of the term is established. Conclusions & Implications In interactions with non-speaking children, determining whether a child is using eye-gaze communicatively requires observation and interpretation of several factors. These processes will be informed by reflection on what is known about other aspects of the child's communication and interaction skills. Within the literature, the term 'eye-pointing' is sometimes used when describing the communication functions of individuals using augmentative and alternative communication (AAC) systems, and is occasionally qualified by a definition. No papers have been found that set out a clinical description universally applicable to children with severe motor impairment. Moreover, guidance is lacking on how possible episodes of 'eye-pointing' might be confidently distinguished from other episodes of directed gaze in young, developing communicators. The discussion of the term makes reference to the importance of gaze in early communication development, and explores factors that might influence gaze and its interpretation in young children with cerebral palsy. A description of eye-pointing for this group is offered. The authors suggest that this will bring practical benefits to those supporting the communication development of children with severe cerebral palsy. © 2013 Royal College of Speech and Language Therapists.


PubMed | Great Ormond St Hospital NHS Foundation Trust
Type: Journal Article | Journal: International journal of language & communication disorders | Year: 2013

Children with cerebral palsy often show significant communication impairment due to limited or absent speech. Further, motor impairment can restrict the use of movement, including pointing, to signal interest and intent. For some children, controlled gaze can be an effective point-substitute: such eye-pointing can be used to request items, establish mutual interest in an event, or select vocabulary within an alternative or augmentative communication (ACC) system. However, in clinical practice there is a lack of clarity about how the term eye-pointing is used, how eye-pointing is recognized or how it relates to social development.To present a clinical description of the term eye-pointing with reference to children with severe cerebral palsy who cannot speak or finger-point. To consider this description within a wider discussion of the importance of gaze in communication development.Cumulative clinical observations during assessment of children referred to a specialist multidisciplinary communication clinic have provoked discussion between the authors on what factors precipitate use of the term eye-pointing in young children with severe cerebral palsy. In particular, discussion has centred on whether use of the term is appropriate in individual cases and whether guidance is available about how gaze should be observed in this developmentally vulnerable group of children. A literature search was also conducted in order to explore whether the use and meaning of the term is established.In interactions with non-speaking children, determining whether a child is using eye-gaze communicatively requires observation and interpretation of several factors. These processes will be informed by reflection on what is known about other aspects of the childs communication and interaction skills. Within the literature, the term eye-pointing is sometimes used when describing the communication functions of individuals using augmentative and alternative communication (AAC) systems, and is occasionally qualified by a definition. No papers have been found that set out a clinical description universally applicable to children with severe motor impairment. Moreover, guidance is lacking on how possible episodes of eye-pointing might be confidently distinguished from other episodes of directed gaze in young, developing communicators. The discussion of the term makes reference to the importance of gaze in early communication development, and explores factors that might influence gaze and its interpretation in young children with cerebral palsy. A description of eye-pointing for this group is offered. The authors suggest that this will bring practical benefits to those supporting the communication development of children with severe cerebral palsy.

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