Rising National Prevalence of Life-Limiting Conditions in Children in England

Fraser, Lorna; Miller, Michael G.; Hain, Richard; Norman, Paul; Aldridge, Jan; McKinney, Patricia A.; Parslow, Roger C

doi:10.1542/peds.2011-2846

Cited by 288 publications

(322 citation statements)

References 8 publications

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“…As reported by Fraser et al (2012), the prevalence for persons aged 0-19 with life limiting conditions increased significantly between 2000-01 and 2009-10 from 25 per 10,000 (CI 24.6,25.1) to 32 per 10,000 (31.9,32.6). In Figure 1 we show that prevalence is highest in the youngest age-group who are less than one year of age.…”

Section: Resultsmentioning

confidence: 54%

“…[Box 1 about here] Fraser et al, (2012) determined that the prevalence of life-limiting conditions in children and young people in England, at 32 per 10,000 population, was double the previously reported estimate (Cochrane et al, 2007).…”

Section: Prevalence Of Life-limiting and Life-threatening Illness In mentioning

confidence: 87%

“…Fraser et al (2012) detail the development of a list of relevant ICD10 codes. The list was derived by combining the 'Hain directory' of ICD10 codes for children seen by paediatric palliative care providers (ACT, 2011) and a list of diagnoses for children accepted for care at Martin House Children's Hospice during the period 1987-2010.…”

Section: Life Limiting / Life Threatening Conditionsmentioning

confidence: 99%

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Prevalence of life-limiting conditions in children and young people in England: Time trends by area type

Norman

Fraser

2014

Health & Place

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Palliative care services in England lack of data on the number of children with 'life limiting conditions' (LLCs). Recent research determined that the prevalence of LLCs in children in England was double previous estimates. We analyse time-trends in the prevalence of LLCs by deprivation and geodemographic area types.Prevalence is highest for children aged less than one year but time trends show no increase for the youngest age group but significant increases for older children. These increases are mirrored by a decrease in all cause mortality for children aged less than one year suggesting improved survival. Whilst the majority of children with LLC live within 20km of a children's hospice this service may still not be accessible due to lack of transport or other factors. Increasing prevalence may require increased paediatric palliative care service provision in the future.

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Section: Resultsmentioning

confidence: 54%

Section: Prevalence Of Life-limiting and Life-threatening Illness In mentioning

confidence: 87%

Section: Life Limiting / Life Threatening Conditionsmentioning

confidence: 99%

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Prevalence of life-limiting conditions in children and young people in England: Time trends by area type

Norman

Fraser

2014

Health & Place

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“…80 There is evidence that children with life limiting conditions make up an increasing burden of ongoing child morbidity as well as contributing to overall child mortality. 81 In contrast to the other categories of death, children who die with identified life-limiting conditions may be less likely to have identifiable modifiable factors, ranging from 4% in children dying of cancer, to 14% in those with chronic medical conditions. 1 What is important for this group of children is that child death review processes may help drive improvements in the quality of care for the child and family, including end of life care (Panel).…”

Section: Unexplained Deathsmentioning

confidence: 99%

Patterns of child death in England and Wales

et al. 2014

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Over the past century child mortality rates have fallen to very low levels in all developed countries. However, there remain wide variations both between and within countries, and in many child deaths factors can be identified which could be modified to reduce the risks of future deaths. An understanding of the nature and patterns of child death and of the factors contributing to child deaths is essential to driving preventive initiatives. This paper reports on the epidemiology of child deaths in England and Wales. It draws on available data, particularly death registration data and other available datasets, along with published literature to highlight the issues relevant to reducing child deaths in developed countries. We highlight the different patterns of mortality at different ages within five broad categories of death: perinatal causes, congenital abnormalities, acquired natural causes, external causes, and unexplained deaths. Within each category we explore what is known about the main causes of death and some of the contributory factors and highlight how this knowledge may be used to help drive prevention initiatives.

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“…This was followed in 2009 by a framework for children's palliative care in the USA by The National Hospice and Palliative Care Organization (Friebert & Huff, 2009). Rising numbers of children and young people with life-threatening and life-limiting conditions and changing expectations of healthcare staff and families have had substantial impact on care and services in the UK (Fraser et al, 2012;Goldman, Hain, & Liben, 2012;McNamaraGoodger & Feudtner, 2012).Consequently, in the UK, the national government has embarked on reforms aimed at improving and integrating health, education and social services for children and their families (Department of Health, 2008;Hunt et al, 2013).…”

mentioning

confidence: 99%