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Fraser L.K.,University of Leeds | Miller M.,Martin House Childrens Hospice | Hain R.,Childrens Hospital for Wales | Norman P.,University of Leeds | And 3 more authors.
Pediatrics | Year: 2012

BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the burden of these conditions. METHODS: Children (0-19 years) with LLCs were identified within an English Hospital Episode Statistics dataset (2000/2001-2009/2010) by applying a customized coding framework of the International Classification of Diseases, 10th Revision, disease codes. Prevalence per 10 000 population (0-19 years) was calculated by age, diagnostic group, ethnicity, deprivation, and region for each year. RESULTS: The Hospital Episode Statistics extract contained 175 286 individuals with 1 or more LLCs of which congenital anomalies were the most common (31%). Prevalence increased over 10 years from 25 to 32 per 10 000 population. Prevalence in the South Asian (48 per 10 000); black (42 per 10 000); and Chinese, mixed, and "other" (31 per 10 000) populations were statistically significantly higher compared with the white population (27 per 10 000). Prevalence shows an inverse J-shaped relationship with 5 categories of deprivation, with the highest prevalence in the most deprived areas and the lowest in the second least deprived. CONCLUSIONS: In 2010, the prevalence of LLCs in children in England was double the previously reported estimates and had increased annually in all areas over the past decade. This clearly identifies an escalating need for specialist pediatric palliative care services. When planning services for these increasing needs, the excess prevalence in ethnic minority groups, especially in deprived areas, needs to be considered. Copyright © 2012 by the American Academy of Pediatrics.


Temming P.,Great Ormond Street Hospital | Jenney M.E.M.,Childrens Hospital for Wales
Archives of Disease in Childhood | Year: 2010

The overall survival of childhood leukaemia has increased dramatically over recent decades. With the increasing number of survivors, chemotherapy protocols are designed not only to improve cure rates but also to minimise long-term sequelae. Central-nervous-system-directed therapy given as intrathecal chemotherapy and/or cranial irradiation plays a crucial part in acute leukaemia treatment but can also result in adverse effects on the developing brain. The elimination of cranial irradiation from current treatment protocols has improved the neurocognitive outcome without compromising survival rates. Although neurodevelopmental long-term sequelae after chemotherapy-only central-nervous-system-directed therapies may be more subtle, survivors of childhood leukaemia will continue to require methodical follow-up and appropriate rehabilitation.


Doull I.,Childrens Hospital for Wales | Evans H.,Southampton General Hospital
Archives of Disease in Childhood | Year: 2012

Background: Although care for children with cystic fibrosis (CF) is increasingly shared between CF centres and local CF clinics, the optimal model is unclear. Objectives: The authors compared three models of care within a well established CF network: full centre care; local clinic based care with annual review by the CF centre; and hybrid care, where the child is usually reviewed at least three times a year by the specialist CF centre. Results: Of 199 children and young people with CF in South and Mid Wales, 77 were receiving full care, 102 shared care and 20 hybrid care. There were no significant differences in baseline characteristics, nutritional outcomes or use of chronic therapies. There was however a statistically significant difference between full, shared and hybrid care in mean forced expiratory volume in 1 s (FEV 1) per cent predicted (89.2% vs 74.5% vs 88.9%; p=0.001). Conclusions: These differences in pulmonary function are likely to reflect the model of care received, and may affect long term outcomes.


Doull I.,Childrens Hospital for Wales
Paediatric Respiratory Reviews | Year: 2014

Studies published in the last year have highlighted the need for age and disease severity appropriate outcome measures. There is conflicting evidence on the usefulness of CT scans in infancy, but increasingly lung clearance index (LCI) appears a sensitive and repeatable measure in those with milder CF lung disease. The number of well designed appropriately powered intervention studies continues to increase. © 2014 Elsevier Ltd.


Doull I.,Childrens Hospital for Wales
Paediatric Respiratory Reviews | Year: 2016

Studies published in the last year have expanded our knowledge of potential disease modifying agents in the treatment of class II, III and IV CFTR mutations, and included the first report of an efficacious gene therapy for CF. There is also an important message on increasing use of conventional chronic therapies even in milder disease, and the pernicious effect of chronic infection on pulmonary function. © 2016 Elsevier Ltd


Nagakumar P.,Childrens Hospital for Wales
Paediatric Respiratory Reviews | Year: 2013

Cystic fibrosis (CF) patients may require frequent courses of antibiotics and repeated hospital admissions. Although children with CF have high carriage rate for C.difficile, they rarely develop colitis. Pseudomembranous colitis is more common in adult post lung transplant CF patients. Although rare, paseudomembranous colitis should be considered in CF patients presenting with abdominal symptoms even in the absence of diarrhoea. © 2013 Elsevier Ltd.


Doull I.,Childrens Hospital for Wales
Paediatric Respiratory Reviews | Year: 2013

This paper reviews a personal selection of three potentially important cystic fibrosis (CF) interventional studies that have been published in the 12 month period preceding the November 2012 RSM CF conference. The review highlights the difficulties in the interpretation of outcome measures in CF. © 2013 Elsevier Ltd.


Whyte L.A.,Childrens Hospital for Wales | Jenkins H.R.,Childrens Hospital for Wales
Archives of Disease in Childhood | Year: 2013

Objectives: The diagnosis of coeliac disease (CD) has increased in frequency, particularly since the accuracy of serological antibody testing has improved. Previous studies from South Wales have shown an increase in the frequency of diagnosis from 1983 to 2004 with a decrease in specific gastro-intestinal symptoms, as well as an increasing age at diagnosis. Aims/methods: We aimed to determine whether the frequency of diagnosis, the age at presentation and the clinical presentation of CD have changed between 2005 and 2011 compared with previously published data from 1983 to 2004. We reviewed all patients with CD presenting to the South Wales' Regional Centre between 2005 and 2011 and compared the age and documented mode of presentation with previous data from the same area. Results: 163 cases of CD were diagnosed between 2005 and 2011 (23 cases/year) with the median age at diagnosis increasing to 14 years (range 0.8-16 years) compared with 50 cases (8/year) between 1999 and 2004 (median age at diagnosis 8 years), 25 cases (2.5/year) between 1990 and 1998 and 11 cases (1.5/year) between 1983 and 1989. 41% presented with specific gastro-intestinal symptoms, 23% with non-gastro-intestinal features and 36% were asymptomatic and diagnosed after serological screening of high-risk groups. Compared with the most recent previous study from the same population, the percentage of patients presenting with gastro-intestinal symptoms remain similar (42% vs 41%) but patients diagnosed after targeted screening had increased from 26% to 36%. Conclusions: The frequency of diagnosis of CD in this defined population has continued to rise, with an increase in the median age at diagnosis, and over 50% of patients exhibited few or no symptoms.


Powell C.V.E.,Childrens Hospital for Wales | Jenkins H.R.,Childrens Hospital for Wales
Archives of Disease in Childhood | Year: 2012

Toddler diarrhoea is a term coined many years ago to describe a young child who passes several loose stools a day but who is otherwise healthy with excellent growth and normal examination. It could be argued that it is not an appropriate diagnostic term as it potentially stops the clinician from thinking about the possible causes of loose stools in this clinical situation. This article, which follows a debate between the authors on the topic at the 2010 Royal College of Paediatrics and Child Health Annual meeting, discusses the differential diagnoses of a young child presenting with the so-called toddler diarrhoea.


Nagakumar P.,Childrens Hospital for Wales | Doull I.,Childrens Hospital for Wales
Archives of Disease in Childhood | Year: 2012

Bronchiolitis is a common, self-limiting, seasonal viral respiratory tract infection in infancy accounting for the majority of hospital admissions in this age group. Supportive care is the mainstay of treatment, concentrating on fluid replacement, gentle suctioning of nasal secretions, prone position (if in hospital), oxygen therapy and respiratory support if necessary. There is a long history of pharmacological agents offering no benefit in acute bronchiolitis. More recently, nebulised epinephrine has been demonstrated to offer short term benefits, while two stratagems have shown promise in decreasing risk of hospitalisation and length of hospital stay. The combination of oral dexamethasone with nebulised epinephrine potentially decreases the need for hospitalisation, while nebulised 3% hypertonic saline mixed with a bronchodilator decreases the length of hospitalisation. Although both stratagems appear safe and well tolerated, their role in clinical practice remains unclear.

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